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The Experience of Children Living with SensoryProcessing DisorderMelissa ScotchWalden University

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Walden University

College of Social and Behavioral Sciences

This is to certify that the doctoral dissertation by

Melissa Scotch

has been found to be complete and satisfactory in all respects,

and that any and all revisions required by

the review committee have been made.

Review Committee

Dr. Anthony Perry, Committee Chairperson, Psychology Faculty

Dr. Susan Marcus, Committee Member, Psychology Faculty

Dr. Debra Wilson, University Reviewer, Psychology Faculty

Chief Academic Officer

Eric Riedel, Ph.D.

Walden University

2017

Abstract

The Experience of Children Living with Sensory Processing Disorder

by

Melissa Scotch

MS, Walden University, 2011

BA, University of South Florida

Dissertation Submitted in Partial Fulfillment

of the Requirements for the Degree of

Doctor of Philosphy

Psychology

Walden University

August 2017

Abstract

Sensory processing disorder (SPD) is a neurological condition that alters the way an

individual perceives sensory information. Although the condition has been studied for

more than 40 years, SPD remains a difficult condition to diagnose, treat, and live with

because it affects individuals uniquely, and the symptoms can change from childhood to

adulthood. For children diagnosed with SPD, the misinterpretation of sensory cues can

cause difficulties in family, social, and academic settings. While there is some research

on the assessment and treatment of SPD, what is missing is a deeper understanding of the

family, social and academic challenges these children and their families face. The

purpose of this case study was to examine the experiences of children diagnosed with

SPD, as told by 4 parents and their occupational therapist in semi-structured interviews.

Four themes emerged from the analysis: family dynamics (challenges within the family

structure), support impact (seeking and having support), emotion and balance

(overcoming the struggles related to the emotional demand), and an SPD child (the search

for balance for the child and the family). The results may serve as a catalyst to encourage

positive social change for the children with SPD and their families by expanding the

available knowledge on the challenges of SPD.

The Experience of Children Living with Sensory Processing Disorder

by

Melissa Dawn Scotch

MS, Walden University, 2011

BA, University of South Florida, 1999

Dissertation Submitted in Partial Fulfillment

of the Requirements for the Degree of

Doctor of Philosophy

Psychology

Walden University

August 2017

Dedication

This dissertation is dedicated to my children Lucas Allan Scotch and Logan

Ayana Scotch, as I have watched you both grow and flourish during the years that I have

also dedicated to my PhD program. I hope that all of the time and struggles that coincided

with this journey provides you with not only a sense of pride for everything we all have

sacrificed, but with the knowledge that hard work and passion are necessary for your

continued and future success. You both amaze me every day and I am better because of

you both. You are my heart and soul, and I love you both always and forever, no matter

what. Thank you for your endless patience through the entire process.

I would also like to take the time to thank my biggest cheerleaders, supporters,

and wiper of all the tears when life and this program became overwhelming, I am so

grateful that we completed this journey together. Of course, a special thank you is

extended to my family, Shelby Angney (mother), Gary Combs (father), Michael Scotch

(husband), and Brianna Scotch (our oldest princess). In addition, the amount of support I

had from my adopted family is a match like no other. Thank you Tamara Smith; I

literally would not be here without you. Special hugs for on-going love from David and

Robin Vidovich, Andy and Dana Mercado, and Rachel Mazzuco. I also need to thank the

most incredible occupational therapist in the world, Linda Moore, you have saved me for

as long as I can remember, Thank you. And I honestly feel as though I should be

thanking the one and only, Steven Tyler for the thousands of hours of background music

listened to while writing. I am so utterly grateful for everyone. I love you all. We did it!

Acknowledgments

I want to highlight the unbelievable support from my dissertation chair, Dr.

Anthony Perry. I appreciate you traveling this journey with me, standing by my side, and

reaching out when I was not entirely sure I had any energy left to even compose a

sentence. I also want to thank my second committee, Dr. Susan Marcus for the focused,

qualitative feedback, and my URR, Dr. Debra Wilson for the incredible and timely

reviews. With your support, I was able to ensure a study based on rigor and the highest

academic standards.

i

Table of Contents

List of Tables ................................................................................................................................. iv

Chapter 1: Introduction to the Study ............................................................................................... 1

Background ................................................................................................................................1

Problem Statement .....................................................................................................................2

Purpose of the Study ..................................................................................................................3

Research Questions ....................................................................................................................3

Theoretical Framework ..............................................................................................................4

Nature of the Study ....................................................................................................................4

Definitions..................................................................................................................................5

Assumptions ...............................................................................................................................6

Scope and Delimitations ............................................................................................................6

Limitations .................................................................................................................................7

Significance................................................................................................................................7

Summary ....................................................................................................................................8

Chapter 2: Literature Review ........................................................................................................ 10

Literature Search Strategy........................................................................................................10

Origination of Sensory Integration ..........................................................................................11

Theoretical Foundation ............................................................................................................11

Chapter 3: Research Method ......................................................................................................... 25

Research Design and Rationale ...............................................................................................25

Role of the Researcher .............................................................................................................26

Methodology ............................................................................................................................27

ii

Participant Selection ............................................................................................................... 27

Instrumentation ........................................................................................................................28

Recruitment, Participation, and Data Collection .....................................................................29

Participation and Data Collection ............................................................................................29

Data Analysis Plan ...................................................................................................................30

Issues of Trustworthiness ........................................................................................................ 30

Ethical Procedures ...................................................................................................................31

Summary ..................................................................................................................................32

Chapter 4: Results ......................................................................................................................... 33

Settings .....................................................................................................................................33

Data Collection and Demographics .........................................................................................34

Data Analyses ..........................................................................................................................35

Thematic Analysis ...................................................................................................................37

Family Dynamics .................................................................................................................... 37

Support Impact ........................................................................................................................ 41

Emotion and Balance .............................................................................................................. 48

A Child With SPD .................................................................................................................. 55

Evidence of Trustworthiness....................................................................................................60

Chapter 5: Discussion, Conclusions, and Recommendations ....................................................... 65

Interpretation of the Findings...................................................................................................65

Limitations of the Study...........................................................................................................68

Recommendations ....................................................................................................................69

Implications for Social Change ................................................................................................69

iii

Conclusion ...............................................................................................................................70

References ................................................................................................................................74

Appendix A: Informed Consent .................................................................................................... 82

Appendix B: Demographic/ Parent Contact Information ............................................................. 86

Appendic C: Occupational Therapist Open-Ended Questions ...................................................... 87

Appendix D: Parental Open-Ended Questions ............................................................................ 89

iv

List of Tables

Table 1. Red Flags for Diagnosing Sensory Processing Disorders in Children ........................... 17

Table 2. Organization of Categories and Themes ......................................................................... 37

1

Chapter 1: Introduction to the Study

Sensory processing disorder (SPD) is a neurological condition that alters the way

an individual perceives sensory information (Miller, 2012, 2013; Miller, Coll, & Schoen,

2007). SPD is a chronic condition and causes mild to severe disruptions in the daily lives

of those who struggle with the disorder (Kraus, 2001; Miller et al., 2007). Although the

condition has been reconized, researched, and reviewed for more than 40 years, the

condition remains a difficult diagnosis due to the complexity of its multiple facets (Ayers,

2005; Collier, 2008; Dunn, 2007; Johnson-Ecker & Parham, 2000; Kraus, 2001; Miller,

2012, 2013; Miller et al., 2007; Tomchek & Dunn, 2007). Individuals with SPD

misinterpret sensory cues, creating on-going struggles in family and social settings

inclusive of school-aged children in an academic setting (Byrne, 2008; Miller et al.,

2007). SPD was denied entrance as a stand-alone diagnosis in the DSM-V; SPD is a

comorbid diagnosis among many other diagnoses, such as autism spectrum disorder,

attention deficit-hyper disorder, Down’s syndrome, neurocognitive learning disabilities;

in addition, the complexity of diagnosing and receiving treatment remains a challenge

(Byrne, 2008; Collier, 2008; Kraus, 2001; Miller, 2012). The rates of SPD are one in 20

children; therefore, more research is needed to provide support to individuals and

families with children struggling with SPD (Byrne, 2008; Collier, 2008).

Background

Families with children diagnosed with SPD experience multiple challenges within

the family structure, academic settings, and social relationships. Support for families

from multiple avenues is vital. Families may experience difficulties coping because SPD

is not included in the DSM-V creates added difficulties for families. Byrne (2008) defined

2

SPD and claimed that there is a need for an increase in diagnoses and for research and

resources to be allocated to SPD. Miller et al. (2007) highlighted that SPD is a

neurological disorder that impacts many areas of a child’s development. Collier (2008)

noted that one in 20 children without comorbid diagnoses are struggling with SPD and

suggested that SPD should be its own diagnosis in the DSM-V. Orloff (2007) also

provided examples of the struggles that coincide with SPD. As the prevalence of SPD

continues to increase, so does the need to understand and aid children with SPD and their

families.

Problem Statement

SPD has been researched, recognized, and reviewed for more than 40 years

(Ayers, 2005; Collier, 2008; Dunn, 2007; Johnson-Ecker & Parham, 2000; Kraus, 2001;

Miller, 2012, 2013; Miller et al., 2007; Tomchek & Dunn, 2007). SPD is a neurological

condition that affects an individual’s ability to perceive sensory cues (Miller, 2012, 2013;

Miller et al., 2007). It is a chronic condition and can be a daily disruption for those

struggling with SPD (Kraus, 2001; Miller et al., 2007). For individuals with SPD, sensory

information can be misinterpreted from any or all of their senses. Due to a neurological

“traffic jam,” the misinterpretation can lead to heightened responses and/ or reduced

responses and even sensory-motor difficulties (Byrne, 2008; Miller et al., 2007). Children

with SPD experience many challenges that include gross and fine motor development

delays, behavioral struggles, and visual complications (Byrne, 2008; Collier, 2008;

Kraus, 2001; Miller, 2012).

SPD remains a difficult diagnosis for multiple reasons (Miller, 2012). Although

SPD is linked to other diagnoses, such as autism spectrum disorders, ADHD/ ADD,

3

Down’s Syndrome, and neurocognitive learning disabilities, the DSM IV- TR 2000 has

not recognized a separate diagnosis for SPD. Therefore, families and children without

linked diagnoses struggle to understand the tools that can help lead to their success

(Byrne, 2008). At least one in six children struggle with sensory issues, if combined with

rates of children with coinciding diagnoses (M. Roth-Fisch, personal communication,

December 4, 2012).

SPD is typically diagnosed by an occupational therapist. Beyond the occupational

therapist, health care providers, such as doctors and nurse practitioners, may also

diagnose children with SBD (Byrne, 2008; Miller, 2012). As the number of children

diagnosed with SPD continues to increase, so does families’ demand for understanding

their children who struggling with SPD (Byrne, 2008; Miller et al., 2007). Understanding

how children with SPD can impact families may aid in providing the needed

environment, tools, and resources to help families support diagnosed children.

Purpose of the Study

Using a basic qualitative methodology, the purpose of the case study was to

explore the experiences of families and children with SPD. This approach allotted for a

rich exploration of the lived experiences of the families and children in multiple settings,

including family, academic, and social settings. To address the gap in the literature, semi-

structured interviews were conducted with an occupational therapist and parents of

children with SPD to capture the experience of families and children and to advance the

knowledge on the challenges of SPD.

Research Questions

Research Question 1: What is the experience of children diagnosed

4

with SPD in the areas of social relationships and school

performance?

Research Question 2: What is the experience of families living with children

diagnosed with SPD?

Theoretical Framework

Multiple challenges exist for families with children diagnosed with SPD (Dunn,

2007; Kraus, 2001; Orloff, 2007). An SPD diagnosis typically comes from occupational

therapists, and the individual may have a cooccurrence with other diagnoses. Although

SPD has not yet been added to the DSM IV as a stand-alone diagnosis, one in 20 children

(with some researchers showing prevalence rates as high as one in six) struggle with

these neurological traffic jams absent of any links to additional diagnoses (Byrne, 2008;

Collier, 2008; Miller, 2012). An occupational therapist who specialized and worked with

children diagnosed with SPD and families already receiving services from the same

occupational therapists agreed to respond in written format to open-ended questions in

this study. General impressions of social development, home experience, and school

environments regarding children diagnosed with SPD were explored to provide

information, perspective, and future thoughts regarding children diagnosed with SPD.

Nature of the Study

The nature of this study was a qualitative case study. Qualitative research has

been used to develop answers to questions surrounding social phenomena (Smith, 2008).

Qualitative studies need to have a range of flexibility so that the topic is able to be

explored with depth (Sandelowski, 1993). In this qualitative case study, an occupational

therapist and parents of children with SPD participated in semi-structured interviews so

5

that I could develop themes related to the experience of families and children living with

SPD.

Definitions

Comorbid diagnosis: A comorbidity is defined by the cooccurrence of two or

more diagnoses occurring in one person at the same time, and is reviewed in relation to

the combination of multiple diagnoses that impact the person’s prognosis and treatment

(Kranowitz, 1998; Leitner, 2014).

Sensory integration disorder: Sensory integration disorder was the original name

for the SPD diagnosis that created sensory struggles. Sensory integration (SI) was

recognized, identified, and labeled first by Ayers (Ayers, 2005; Collier, 2008; Miller,

2012; Miller, 2013; Miller et al., 2007; Tomchek & Dunn, 2007). It is defined by the

neurobiological activity where there is a breakdown in the nervous system processes that

feeds the information from a person’s senses and organizes stimuli (Ayres, 2005; Miller,

2012). It is these processes that develop a person’s perceptions, learning abilities, and

behaviors, and when there is a breakdown, or jam in this system and information is not

delivered to the correct place in the brain, or not delivered at all, challenges develop due

to these struggles (Ayres, 2005; Miller, 2012).

Sensory processing disorder (SPD): SPD is defined as a neurological traffic jam,

and it impacts sensory cues. It is considered an umbrella term to represent the uniqueness

of experienced challenges that individuals struggling with SPD experience (Miller, 2012,

2013; Miller et al., 2007). Persons with SPD cannot function or adapt to normal

social circumstance, they do not fit easily into other known physical or psychological

diagnoses, and laboratory studies suggest that both the sympathetic and parasympathetic

6

nervous systems are not functioning in a typical manner (Ayers, 1979, 2005; Kraus,

2001; & Miller, Nielsen,Schoen, & Brett-Green, 2009).

Assumptions

Qualitative researchers assume that understanding from the lived experiences of

participants can be acquired (Guest, Bunce, & Johnson, 2006). Another assumption of

this study was that the children of the parents who had received services form the

occupational therapist had an SPD diagnosis. It was also assumed that the occupational

therapist and the parents of the children diagnosed with SPD were able to articulate the

experiences of the children within their family structure, social settings, and the academic

arena. In addition, it was assumed that the participants shared honest information

regarding their experiences (Patton, 2002). I continued to foster a relationship based on

mutual respect so the participants felt at ease and comfortable when sharing details of

their experiences. The study provided anonymity for all particpants, and semi-structured

interview questions were developed to seek out the experiences associated with SPD. I

assumed that the information shared was honest and provided a brevity of shared

experiences to the point of saturation. The study relied on such assumptions to ensure the

rigor and validity.

Scope and Delimitations

In this study, I investigated the experiences of children living with SPD from the

perspective of an occupational therapist and their parents. The experiences were collected

from semi-structured interviews that were developed for this study to ensure a thorough

analysis of a child’s experiences diagnosed with SPD.

7

In this qualitative case study, the transferability of the study was achieved from

the evolution and content of the themes that developed from the interviews with the

occupational therapist and the parents. Although there was a limited sample, the

participants were focused on providing a comprehensive view of the experiences of a

child with SPD in the context of family, social, and academic settings.

Limitations

The study had minimal limitations. The first possible limitation was approach.

Qualitative research is multifaceted; yet, the rigor for such remains questionable among

some researchers (Houghton, Casey, Shaw, & Murphy, 2013; Sandelowski, 1993). The

second limitation stemmed from a single occupational therapist and four parents who

were used to gather feedback on open-ended questions for data collection. The third

limitation was the data collected were gathered from a rural area of Northeast

Pennsylvania with mainly a White population. Lastly, possible researcher bias must be

mentioned for a limitation, as she has two diagnosed children.

Significance

There is a significant body of literature on the diagnosis of SPD as a stand-alone

diagnosis. Both qualitative and quantitative study have been conducted on SPD from the

past 4 decades. A recognition by Carol Kranowicz nearly forty years ago who has led a

global outreach, continued study, and research centers that are devoted to sensory

processing disorder, the research associated with the diagnosis, its treatment, and support

for families.

SPD prevalence rates are continuing to increase. At least one in 20 children

struggle with SPD issues, while rates of children with autism spectrum disorders,

8

pervasive developmental disorders, Down’s syndrome, and neurocognitive learning

disabilities were 85% or higher (M. Roth-Fisch, personal communication, December 4,

2012). With increased prevalence rates and limited awareness of SPD, research needs to

be developed that can increase awareness and provide resources and tools for families

that have children diagnosed with SPD. The families can use these resources to provide

higher success rates for children who may struggle with motor, social, behavioral, and

academic skills.

Although there are various comorbid diagnoses that exist with SPD, needing a

stand-alone diagnosis for both support and treatment of children and their families has

left many parents searching for answers with little support. Medical community and

insurance companies do not currently provide the needed aid for families with children

with SPD as a stand-alone diagnosis remains difficult. The significance of the study

really is 2-fold. First, there is the hope to shed additional light on sensory processing

disorder as a stand-alone diagnosis. Secondly, there are hopes that adding continued

research to this area will highlight the urgency and need to be added to future DSM

publications. In this study, I highlighted that it is important that families have the ability

to reach out and receive services, and that parents of the children with SPD know that

there is a host of support venues for them.

Summary

The purpose of this study was both to gain insight regarding the social, emotional,

and family experiences that SPD can have if living with a SPD child. SPD needs to be

recognized as a stand-alone diagnosis in future DSM manuals to help those seeking and

requiring services via occupational therapy.

9

Chapter 2 was a review of the literature that both reflected and supported the

direction of the study. The literature review provided the foundation needed to further

explore sensory processing disorder and the experiences on the diagnosed children and

their families.

10

Chapter 2: Literature Review

SI, now termed SPD, is an area that has been identified and researched for more

than 40 years (Ayers, 2005; Collier, 2008; Dunn, 2007; Johnson-Ecker & Parham, 2000;

Kraus, 2001; Miller, 2012, 2013; Miller, Coll, & Schoen, 2007; Tomchek & Dunn,

2007). The original theory of SI was recognized, identified, and labeled first by Ayers

(Ayers, 2005; Collier, 2008; Miller, 2012, 2013; Miller et al., 2007; Tomchek & Dunn,

2007). SPD is an umbrella term that aids in labeling and identifying sensory issues that

are both multilayered and multifaceted (Miller, 2012, 2013). It is a complex diagnosis

that presents definitive physiological differences between children with SPD and those

who are considered to be developing according to traditional milestones (Ayers, 1979,

2005; Kraus, 2001; Miller et al., 2009). Researchers have claimed that there is a genetic

link between environmental factors and SPD (Miller, 2012).

Literature Search Strategy

A literature search was conducted using libraries, as well as multiple web pages

and search engines. Research was obtained from multiple resources including

Educational Resources Information Center (ERIC), PsycINFO, PsycARTICLES,

Psychology: A SAGE Full-Text Collection, CINAHL & MEDLLINE Simultaneous,

Diagnostic Statistical Manual of Mental Disorders (DSM-5), Mental Measurements

Yearbook, Academic Search Complete, Dissertations, and the Sensory Processing

Disorder National Conference. Integral searches completed included the following key

words: sensory integration dysfunction, SPD, SPD comorbidities, Sensory modulation

disorder (SMD), sensory-based motor disorder (SBMD), sensory discrimination disorder

(SDD), red flags for SPD, multisensory integration, occupational therapist and sensory

11

treatment, assessment of SI, assessment of sensory processing, Sensory Profile, Sensory

Short Profile, SI and Praxis Test, neurology of SPD, Sensory Processing Measure, Dr.

Jane Ayers, Carol Kranowitz, Dr. Lucy Miller, grounded theory, and qualitative rigor.

Origination of Sensory Integration

SI is defined as the neurological process that organizes multiple sensations

(Ayers, 2005). Also called multisensory development, it allows the body to effectively

identify, process, and utse information from a person’s environment (Ayers, 2005;

Collier, 2008; Dunn, 2007; Johnson-Ecker & Parham, 2000; Miller, 2013; Miller et al.,

2007; Tomchek & Dunn, 2007). The theory of SI (now termed SPD) stated that

sensations received during activities provides the bases of neuronal intake and the precept

of an individual’s body in space and time (Ayers, 1979, 2005; Miller, Anzalone, Lane,

Cermak, & Osten, 2007). Necessary for every aspect in life, SI provides the ability for a

person to relate to his or her body in space while deciphering the possible needed

adaptation and meaningful body precept. Praxis is the underlying skill that provides a

person the ability to develop properly and milestone-appropriate adaptive skills of

conceptualization, motor planning, and execution (Ayers, 1979, 2005; Miller, 2013).

Both perception and praxis are the results of a person’s sensory integration abilities;

somatosensory, vestibular, and visual input for development of a person’s sensory

integration and praxis abilities are essential to the person’s environmental interactions

(Ayers, 1979, 2005).

Theoretical Foundation

The purpose of theory within science, regardless of approach, is to provide

possible typologies, logical explanations, predictions, potential for control, and a sense of

12

understanding (Sandelowski, 1993; Smith, 2008). Like any theory, the original work of

Dr. Jean Ayers has seen many developments, expansion, changes, and examination via

continued research throughout many decades. Stating that it is a neurological ‘traffic

jam,’ the fact remains that sensory integration (now termed sensory processing disorder)

is a chronic, neurological condition that disrupts a person’s ability to interpret readings on

a person’s senses or how he or she perceives sensory cues (Ayers, 1979, 2005; Byrne,

2009; Miller, 2012, 2013).

The label Sensory integration dysfunction raised concerns in the medical realm

because its signature abbreviation of SID (sometimes SI) was causing confusion with

another diagnosis, sudden infant death syndrome (also SIDs; Miller, 2012). Sensory

integration dysfunction was changed to SPD, which will be used for the remaining text

when referring to the diagnosis (Miller, 2012). Recognizing SI as the initial theory prior

to being adapted to SPD is necessary to be able to infuse and integrate past and current

research (Miller, 2012).

SPD was a diagnosis for behavior in ‘otherwise healthy children (Ayers, 1979,

2005; Kraus, 2001). Researchers found that children with SPD could not function or

adapt to normal social circumstance, they did not fit easily into other known physical or

psychological diagnoses, and laboratory studies suggest that both the sympathetic and

parasympathetic nervous systems are not functioning in a typical manner (Ayers, 1979,

2005; Kraus, 2001; Miller et al., 2009). The daily disruptions for persons with SPD may

involve many, if not all, aspects of their lives. At least one in 20 children struggle with

sensory issues (Ayers, 2005; Collier, 2008; Dunn, 2007; Johnson-Ecker & Parham, 2000;

Kraus, 2001; Miller, 2012, 2013; Miller et al., 2007; Tomchek & Dunn, 2007), but may

13

be as many as one in six children (Collier, 2008; M. Roth-Fisch, personal

communication, December 4, 2012; Miller, 2012). Due to the theory’s relative newness,

researchers are also finding that many adults have remained undiagnosed until

more recent times (Miller, 2012).

Although pediatricians, physician assistants, nurses, and other clinicians may

provide an SPD diagnosis, most diagnoses to date have been, and continue to be from,

occupational therapists (Byrne, 2009; Collier, 2008; Kraus, 2001). Due to the unique set

of sensory symptoms that are not able to be explained by other disorders, current routes

to identify children with SPD include clinical assessment and observation, parent

surveys, and laboratory protocol (Ayers, 1979, 2005; Kraus, 2001; Miller et al., 2009;

Parham, 1998). Tools of assessment for diagnosing SPD may include, but are not limited

to, the Sensory Integration and Praxis Test (SIPT), The Sensory Profile, The Short

Sensory Profile, and the Sensory Processing Measure. These scales are filled out by

parents, teachers, and additional caretakers and are used as a means of screening children

for indicators of SPD (Ayers, 1989, 2005; Brown & Dunn, 2002; Dunn, McIntosh,

Miller, & Shyu, 2002; Miller, 2012; Parham, Ecker, Kuhanek, Henry, & Glennon, 2007).

In addition to assessments, observations for an evaluation are conducted in a

clinical setting with an occupational therapist using age-appropriate life situations, as

well as interviews that may be conducted with children and/ or parents, teachers, and

other concerned caregivers (Ayers, 1989, 2005; Brown & Dunn, 2002; Byrne, 2009;

Dunn et al., 2002; Miller, 2012; Parham et al., 2007). Parents/caregivers, teachers, and

other caretakers can usually identify red flags for varying age groups (Byrne, 2009;

Miller, 2012). Red flags of SPD are divided into the following subgroups: infants and

14

toddlers, preschoolers, grade-schoolers, adolescents and adults (Miller, 2012). All of the

methods are used as tools to help identify and diagnose children with SPD, as early

intervention can lead to better adaptive behaviors, less disruption, and positive social

interactions (Collier, 2008; Kraus, 2001; Miller, 2012).

As a global umbrella term, SPD is both multilayered and multifaceted (Kraus,

2001; Miller et al., 2007; Orloff, 2007). The latest nosology proposed for diagnostic

categories has SPD divided into the following subgroups: SMD, SBMD, and SDD. Each

of the subgroups also has additional layered divisions of the sensory modulation disorder,

sensory-based motor disorder, and sensory discrimination disorder (Miller, 2012; Miller

et al., 2007; Reeves & Cermak, 2002).

Sensory Modulation Disorder

Sensory modulation disorder (SMD) is one of 3 main sub-groups under the main

umbrella term, sensory processing disorder (Mangeot et al., 2001; Miller et al., 2007).

Sensory modulation disorder is a label that explains the modulating difficulties that

occurs upon sensory intake. Divisions within the SMD label include sensory

overresponsiveness (SOR), sensory under-responsiveness (SUR), and sensory craving

(Miller et al., 2007). Sensory over-responsiveness, or sensory defensiveness, refers to the

hypersensitivity that is felt from an overload of sensory input. Children who experience

over-responsiveness may exude multiple behaviors including: frequent meltdowns,

aggressiveness, irritability, frustrations in social circumstances, difficulty transitioning,

and adapt slowly to new environments (Miller et al., 2007). Children who exhibit

behaviors from this sub-group may be sensitive to loud noise, be bothered by bright

lights, have multiple texture issues, and get upset by light or soft touch (Miller, 2012;

15

Miller et al., 2007). A child with sensory under-responsiveness will appear calm and

quiet, and may not even realize differences in temperatures (if an object is too hot or too

cold), or even acknowledge a scrape or injury if hurt (Miller, 2012).

Sensory-Based Motor Disorder

Sensory-based motor disorder occurs when sensory intake becomes disorganized

and leads to improper processing of information (Miller, 2012). The result is postural

disorders or dyspraxia (Miller, 2102; Miller, 2013). Postural disorder consequences are

poor muscle tone and balance challenges. The combination leads to a child being

uncoordinated and uncomfortable in their own body (Miller, 2007).

Postural challenges lead to dysfunction and limited oral motor, ocular motor,

vestibular motor, and proprioceptive motor skills (Miller, 2007). Occupational therapist’s

observations and parent reports reveal multiple struggles and challenges. Frequent

drooling, poor eating habits, visual issues regarding tracking, convergence, double vision,

and poor depth perception, and a tendency to lean or slump is reported (Densmore, 2009;

Miller, 2007). Additional challenges shown are uncoordinated physical activities, poor

gross and fine motor development, consistent fidgeting, and irregular respiration and

heartbeat (Densmore, 2009; Miller, 2007).

Dyspraxia presents additional unique challenges to those diagnosed with sensory

processing disorder. Dyspraxia, meaning ‘dys,’ or badly and ‘praxis,’ or to do, reveals

multiple challenges regarding motor planning, organizing, sequencing, and timing

(Miller, 2007; Reeves & Cermak, 2002). Research shows that children struggling with

dyspraxia have difficulties in areas of performing fine motor activities, eating with

utensils, working with scissors, zipping or buttoning skills, handwriting, completing

16

multi-step or complex tasks, and a display of poor hand-eye and foot-eye coordination

skills (Miller, 2007).

Sensory Discrimination Disorder

There is support showing children diagnosed with sensory discrimination disorder

have an altered view of the world in which they live. The information received from their

senses becomes disorganized and miscommunicated to the body and results in a

confusing world (Miller, 2012). Sensory discrimination disorder results in challenges

regarding tactile, gustatory, auditory, visual, vestibular, proprioceptive, and interoceptive

discrimination abilities (Cermak & Henderson, 1990; & Miller, 2012).

Specific challenges have been found regarding sensory discrimination disorder

(Miller et al., 2007; & Miller, 2012). Children diagnosed in this specific area have

difficulties inclusive of being touched, connecting an object in space, describing an object

by touch alone, distinguishing temperatures and flavors, struggle with dysgraphia,

consistent displays of inappropriate pressures during activities, and distinguishing

individual objects in a group (Miller et al., 2007).

Assessment

SPD is a neurological traffic jam for persons of all ages and is a global umbrella

term for sensory challenges. Sensory issues can present themselves in multiple ways via

various senses allotting for a multitude of recognizable red flags for all ages. Usually

grouped as the following; infants and toddlers, preschoolers, grade-schoolers, adolescents

and adults, sensory issues present serious challenges because of the numerous ways it can

exhibit its red flags (see Table 1).

Prominent infant and toddler red flags include recognizable eating and sleeping

17

problems, a resistance when being held, motor delays, over-all uncomfortableness when

dressed, and inability to soothe oneself (Miller, 2012). Often preschoolers will display an

over-sensitivity to smells, touches, and noises, delayed motor skills, struggles with eating,

sleeping, and toilet training, and can exhibit extended ‘meltdowns’ (Miller, 2012). Grade-

schoolers display similar challenges as their preschool counterparts, but become Sensory

processing disorder is a neurological traffic jam for persons of all ages and is a global

umbrella term for sensory challenges. Sensory issues can present themselves in multiple

ways via various senses allotting for a multitude of recognizable red flags for all ages.

Usually grouped as the following; infants and toddlers, preschoolers, grade-schoolers,

adolescents and adults, sensory issues present serious challenges because of the numerous

ways it can exhibit its red flags (see Table 1).

Table 1

Red Flags for Diagnosing Sensory Processing Disorders in Children

Infants and Toddlers Pre-schoolers

Sleeping and eating problems Over-sensitive to touch, noise, smells

Irritable when being dressed Difficulty making friends

Uncomfortable in clothing Difficulty dressing, eating, sleeping

Resists cuddling Clumsy or weak motor skills

Unable to self-soothe Frequent and extended ‘melt downs’

Motor delays In constant motion

Grade schoolers Adolescents and adults

Over-sensitive to touch, noise and smells Over-sensitive to touch, noise, smells

Constantly fidgets Fear of failing at new tasks

Easily distracted Slow and lethargic

Difficulty with motor skills Impulsive and distractible

Difficulty making friends Poor motor skills

Lack of awareness of surroundings Lack of focus

*Adapted from Miller, Anzalone, Lane, Cermak, & Osten, E.T. (2007).

18

Prominent infant and toddler red flags include recognizable eating and sleeping

problems, a resistance when being held, motor delays, over-all uncomfortableness when

dressed, and inability to soothe oneself (Miller, 2012). Often preschoolers will display an

over-sensitivity to smells, touches, and noises, delayed motor skills, struggles with eating,

sleeping, and toilet training, and can exhibit extended ‘meltdowns’ (Miller, 2012). Grade-

schoolers display similar challenges as their preschool counterparts, but become more

involved with age. Red flags recognizable for this particular age-group include all of the

preschool red flags, but also incorporate possible issues in areas of handwriting and other

fine motor skills, have increased difficulty interacting in a social circumstance, exhibit

extreme fidgetiness, and often live in an overwhelmed state (Miller, 2012). Building upon

prior red flags, adolescents and adults render that of their prior counterparts as well as an

overall lethargy to life. They can be extremely impulsive and distract easily in various

settings. Adolescents and adults exhibiting red flags for sensory processing disorder may

also leave projects incomplete, suffer from poor self-esteem, and have anxiety regarding

new tasks (Miller, 2012).

Tools for Assessment

Tools for assessment are utilized for screening indicators for sensory red flags.

Developed by Dr. Jean Ayers and still part of an evaluation for children 4 to 8 years of

age, the Sensory Integration and Praxis Test (SIPT) helps to identify developmental and

learning delays such as; praxis difficulties, tactile issues, and struggles with visual

discrimination (Ayers, 1989).

The Sensory Profile is a 125 item questionnaire answered by parents/ caregivers.

The profile is utilized to aid in determination of a child’s daily functioning (Dunn,

19

McIntosh, Miller, & Shyu, 2002). The profile exists for children ages 5 – 10 years of age,

but can be easily adapted to 3 to 4 year-olds. The 125 items are divided into 3 main

sections including sensory processing, modulation abilities, and behavioral and emotional

responses (Dunn et al., 2002). Measures from this profile reflect parents/ caregivers

opinions regarding their child’s sensory processing systems including: auditory, oral,

multisensory, touch, vestibular, and visual sensory systems. The profile takes

approximately 30 minutes and is based on a 5-point scale (Dunn et al., 2002).

The Short Sensory Profile (SSP) is a quick screening tool that provides a 38 item

questionnaire (Dunn et al., 2002). It takes approximately 10 – 15 minutes is also

answered by parents/ caregivers. In addition to The Sensory Profile and the Short Sensory

Profile, there are extended designs of the profile that includes the Infant/ Toddler Sensory

Profile, the Infant/ Toddler Sensory Profile – Clinical Edition, the Sensory Profile School

Companion, and the Adolescent/ Adult Sensory Profile (Dunn et al., 2002).

The Sensory Processing Measure (SPM) is a measure for ages 5 – 12 years of age

and is a 75-item rating scale (Parham et al., 2007). The measure is given to parents/

caregivers and teachers and is based on the 4-point Likert scale (Parham et al., 2007). It is

an independent measure that provides interpretive measures of dysfunction inclusive of:

typical range, some problems range, and the definite dysfunction range (Parham et al.,

2007).

In addition to the profiles that are utilized as indicators of sensory processing

disorder, the profiles often coincide with a comprehensive evaluation from an

occupational therapist (Miller, Schoen, James, & Schaaf, 2007). As part of the evaluation,

behaviors and reactions to environmental stimuli is observed (Miller et al., 2007). An

20

occupational therapist may also conduct interviews with parents/ caregivers, teachers, and

other relevant persons in the child’s life (Miller et al., 2007).

Laboratory settings are also providing support in a clinical setting. With the use of

Positron Emission Tomography (PET) scans and Electroencephalogram (EEG), clinicians

have been able to show definitive differences between a child with sensory issues and

child that does not have sensory issues (Davies & Gavin, 2011; Miller, 2012). Changes in

the nervous system have been reported by monitoring the neurophysiological processes

or the neural organization abilities of the child (Davies & Gavin, 2011; Miller, 2012).

Both the PET scan and the EEG examine the central nervous system (CNS integration

abilities (Davies & Gavin, 2011; Miller, 2012). The PET scan is an imaging test that

utilizes nuclear medicine, or radiation, to produce 3-dimensional, color images of the

functional processes in the human body (Wampole, Kairys, Mitchell, Ankeny, Thakur, &

Wickstrom, 2013). The EEG allows the medical community to measure the activity of the

child’s brain cells communication abilities via electrical signals, or impulses (Davies &

Gavin, 2007). In addition to the PET scan and the EEG, clinicians are measuring muscle

response to induced sensory input via Electromyography (EMG) (Fuentes, Mostofsky, &

Bastian, 2011; Miller, 2012) It is motor neurons that transmit electrical signals that cause

a person’s muscles to contract (Fuentes et al., 2011). The EMG is a diagnostic procedure

that assesses the health of muscles and nerve cells that control them (Fuentes et al., 2011;

Stein, 2013). It is then translated into various graphs, sounds, and numerical values to

obtain results (Fuentes et al., 2011).

More recent study utilizing diffusion tensor imaging (DTI) investigated what, if

any, role white matter in the brain may be implicated in differences between children

21

with and without sensory processing disorder (Owen et al., 2013). Significant decreases

in posterior white matter were measured in the posterior corpus callosum, the posterior

thalamic radiation, and the posterior corona radiate (Mukherjee et al., 2008; Owen et al.,

2013).

Being defined by microstructural characteristics such as myelination, fiber

density, and axonal diameter, white matter tracts are vital to the human brain in

establishing bandwidth, or the amount of information the brain can store, and speed of

communication of the information (Owen et al., 2013). With the recent development of

DTI measures for SPD, researchers now have substantial, non-invasive ways to measure

brain differences between children with and without SPD. This also establishes further

support to the argument that sensory processing disorder is indeed a stand-alone

diagnosis and should be reconsidered for admission to the DSM (Mukherjee et al., 2008;

Owen et al., 2013).

Sensory Processing Disorder and Comorbities

Although research supports sensory processing disorder as a stand-alone

diagnosis, there is an estimated forty to sixty percent of children with other comorbid

diagnoses such as autism, attention-deficit hyperactivity disorder, downs syndrome,

learning disabilities and other pervasive developmental disorders (Miller, 2012; Owen et

al., 2013). The most common comorbid diagnoses with sensory processing disorder are

autism and attention-deficit hyperactivity disorder (Miller, 2012; Owen et al., 2013).

Sensory Processing Disorder and Autism

Autism spectrum disorders (ASD) are recognized markedly by their qualitative

impairments that are observed in a person’s communication and social interaction skills

22

(Dawson & Watling, 2000; Dovydaitienė, Vaitiekutė, & Nasvytienė, 2013; Owen et al.,

2013). It is a neurodevelopmental disorder that has restricted-type repetitive behaviors

(American Psychiatric Association [APA], 2000; & Dawson & Watling, 2000). In

addition to typical ASD behaviors, persons with autism exhibit more sensory processing

issues than their counterparts without disabilities (Miller, 2012; Pfeiffer, Koenig,

Kinnealay, Sheppard, & Henderson, 2011; Tomchek & Dunn, 2007). The sensory

processing disorders that coincide with ASD have been well documented through-out

multidisciplinary scientific research (Ornitz, 1989; Ornitz, Lane, Sugiyama, & de

Traversay, 1993; Yeung-Courchesne & Courchesne, 1997). Children with autism tend to

exhibit increased sensory, behavioral, and emotional struggles over their typically

developing counterparts (Dovydaitienė, Vaitiekutė, & Nasvytienė, 2013; Ermer & Dunn,

1998; Kientz & Dunn, 1997; Watling, Deitz, & White, 2001). For most cases, it is usually

a recognition of sensory issues that are a prelude for further investigation and lead to

ASD diagnosis (Adrien et al., 1993; Baranek, 1999; Dahlgren & Gillberg, 1989; Lord,

1995). Thus far, sensory issues in ASD diagnosed children and adolescents continue to

come from parent/ caregiver reports, observations in clinical settings, self-reports which

are showing both groups; under-responsiveness and over-responsiveness (Miller et al.,

2005; Pfeiffer et al., 2011). Providing a better understanding that sensory processing

difficulties create for children with autism will provide greater insights and understanding

to daily struggles and future treatment (Dovydaitienė, Vaitiekutė, & Nasvytienė, 2013).

Sensory Processing Disorder and Attention Deficit-Hyper Disorder (ADHD)

Although research has answered many questions regarding SPD and ADHD,

many more questions remain (Byrne, 2009; Mangeot, Miller, McIntosh, McGrath-Clarke,

23

Simon, Hagerman, Goldson, 2001). It is known that an estimated forty to sixty percent of

the children that have one disorder also show symptoms of the other disorder (Byrne,

2009; Mangeot et al., 2001; Miller, 2012). Sensory processing disorder and ADHD are

both neurological deficits, but are separate diagnoses with a unique set of symptoms

(Mangeot et al., 2001; Miller, 2012; Muro, 2011). Inattentiveness, instances of

hyperactivity, and uncontrollable impulsivity all help define characteristics of ADHD

(Muro, 2011). Like sensory processing disorder though, ADHD also provides varying

levels of difficulty in daily functioning (Mangeot et al., 2001; Miller, 2012; Muro, 2011).

Distinguishing between the 2 disorders, but knowing the possibility of comorbid

diagnosis may exist can provide better treatment and outcomes for the diagnosed child

(Miller, 2012).

Diagnostic Statistic Manual 5 (DSM-V)

The rally for the inclusion of sensory processing disorder into the DSM began in

the year 2000 (Miller, 2012; Miller, 2013). Not only would the DSM acceptance provide

a foundational push for additional research and funding, but would also help provide

needed scientific support for services in a treatment capacity (Miller, 2012; Miller, 2013).

In December 2012, a decision by the American Psychiatric Association was reached

(American Psychiatric Association, 2013). The decision to exclude as a standalone

diagnosis in the DSM-5 was announced. Although the decision caused disappointment to

the sensory processing disorder community, research and advancements in the study of

SPD continue with the hopes for further consideration (Miller, 2012; Miller, 2013).

Summary and Conclusions

24

Chapter 2 affords an overview of various literature linked to SPD and its multiple

facets regarding diagnosis. The overview of the literature highlights the important role

that exists for occupational therapists regarding children diagnosed with SPD. In

addition, the literature explains the multifaceted and multi-layered dimensions to sensory

processing disorder, as well as the current status of the diagnosis among the clinical

world.

In addition to treatment setting, families of children with SPD face many

challenges in various settings. Research is showing that at least one in twenty children

struggle with sensory issues and that the possible more realistic number attached to such

may be as much as one in six children. With increasing prevalence, exclusion in the

DSM-V, and the abundant variations labeled under the umbrella term of SPD, review of

the literature and support for future study is warranted. Also, not always being a stand-

alone diagnosis, as many and multiple co-morbid diagnoses can exist with sensory

processing disorder, the impact on a daily basis for many, is felt in multiple

circumstances and in various communities. Occupational therapists remain the leading

practitioner to assess and provide treatment for children struggling with sensory

processing disorder.

The following, Chapter 3 expresses the research design, the approach and

methodology of the study, and a comprehensive synopsis of procedures. Chapter 3 also

provides data collection methods, explanation of setting and sample, and materials

utilized in the study.

25

Chapter 3: Research Method

The purpose of the study was to research, collect data, and provide a qualitative

perspective as to the family experiences of children diagnosed with SPD. Chapter 3

provides a synopsis of the research design; the role of the researcher; and the procedures

for selecting participants and collecting data, the interview guide, data analysis plan, and

ethical and quality considerations. My personal experience as a parent of children with

SPD is considered, along with possible researcher biases and the strategies for

minimizing them. In addition, the role of advocacy integration as the conceptual

framework is presented.

Research Design and Rationale

A qualitative, exploratory study from an advocacy perspective was used to

examine commonalities of children diagnosed with SPD and provided perspectives from

the children’s occupational therapist and their parents/ caregivers. Qualitative

methodology provides a range of flexibility that allows a subject to be viewed in depth

via a description of the social phenomena (Casey, Shaw, & Murphy, 2013; Cope, 2014;

Strauss & Corbin, 1990). A basic design was appropriate for this exploratory study, as

this phenomenon had not yet been explored. Integration of advocacy issues also were

infused throughout the chapter to include a discussion regarding information and support

for SPD. I established direction on the development of theory related to social

phenomena of SPD. The results of this study can contribute to research and advocacy for

SPD to be added to the DSM as a stand-alone diagnosis to aid children and families to

receive needed services for treatment (Miller, 2012, Miller, 2013). The study was

designed to answer the following research questions:

26

Research Question 1: What is the experience of children diagnosed

with SPD in the areas of social relationships and school performance?

Research Question 2: What is the experience of families living with children

diagnosed with SPD?

Role of the Researcher

In qualitative research, the researcher is the principal instrument when collecting

data for a study (Hoepfl, 1997). For this study, I was both the researcher and parent of

two children diagnosed with SPD. In cases where the researcher has multiple roles,

ethical concerns must be handled, and the multiple positions of the researcher must be

reported honestly to maintain integrity in the study (Connelly, 2014). Furthermore, the

occupational therapist interviewed for this study was the occupational therapist for both

of my children who were diagnosed SPD. She was their occupational therapist for over 4

years. The occupational therapist and I had a professional relationship that extended

beyond her role as my children’s occupational therapist. Although differing roles, we

were both therapists and we were placed on the same cases for several children in my

prior position as an expanded mobile therapist.

As a parent, I have dealt with this diagnosis for more than a decade; researching,

reaching out to others with similar stories, and living with SPD has been integral into

daily life. Two of the most difficult questions have remained: what does SPD look like?

Is that behavior due to SPD or is it the age and acting out? To separate a diagnosis that is

infused into every aspect of a child’s life seems problematic at best; yet, more than a

decade after diagnosis of my children, understanding and acceptance of SPD as a stand-

alone diagnosis remains unrecognized, according to the DSM-V. Due to a lack of

27

acceptance, receiving services for SPD children remains a daily challenge. SPD aspects

are blanketed under a massive umbrella. Children and their environments continue to

grow and change, making the ability to adapt to environments for long periods of time

impossible. The examination expressed the multi-faceted challenges and the demand for

continued support to the evolving child. As both the researcher and parent, I see the

urgency to contribute to greater acceptance and understanding in social settings, such as

school and home, and to advocate for on-going resources for children who have SPD

challenges.

As the researcher for this qualitative examination on SPD, I had to remain focused

throughout, to ensure that personal interjection, preconceptions and notions, andpersonal

experience did not influence the data collection or analyses of data for this study. The

following strategies were employed in order to reduce the risk of bias. Member checking,

or sending each interviewee a summary of his or her responses to the open-ended

questions and asking them to ensure accuracy of interpretation, was employed. In

addition to member checking, an audit trail as a secondary approach was also used to aid

in the reduction of researcher bias. An audit trail provided a concise trail of

documentation regarding the data collection and analyses processes (Shenton, 2004).

Methodology

Participant Selection

SPD research remains limited in regards to the length of time it has been studied

and received recognition within the medical community. However, understanding the

experience of SPD requires perspectives from multiple experienced, information-rich

viewpoints (Miller, 2013). Therefore, an intensity sampling strategy was used to collect

28

data from the exemplar (but not extreme) individuals involved in the social and family

experience (Patton, 2012).

The occupational therapist selected to participate had been working the field for

more than 25 years and had specialized knowledge and training in the area of SPD. She

had attended national seminars sponsored by the SPD Foundation and was associated

with other experts in the field. I used the occupational therapist as a conduit to gain

access to parental information. Parents who received services from the occupational

therapist provided multiple parents the informed consent form (see appendix A) and the

parent contact information form (see appendix B). If parents were interested in

volunteering as a participant in the study, they then contacted me via email. The

occupational therapist was not aware of who decided to participate, and no traditional

recruiting was conducted.

Instrumentation

Demographic/ Parent Form

The demographic form was a set of five questions regarding a personal

information sheet that remained confidential, but provided best points of contact for

future communication. The form also contained demographic information on their

location and data on their child diagnosed with SPD. The information that was collected

and relevant for this study included (a) name, (b) address, (c) phone, (d) email, and (e)

child’s age and gender.

The open-ended questions were developed based on the information from the

literature. Being able to ask questions that are timely and relevant to continue the

advancement of knowledge and understanding for SPD was needed (Miller, 2013).

29

Questions developed for the occupational therapist and for the parents were varied, as

they represented multiple perspectives on the topic. The occupational therapist (Appendix

C) and the parental (Appendix D) open-ended questions were focused to gain a rich

understanding of the experience of both the children diagnosed with SPD and their

families.

Recruitment, Participation, and Data Collection

Recruitment

The occupational therapist was initially contacted by phone regarding her

willingness to participate in the study. The parents received an informational sheet, and I

explained to each parent that if they participated in the study, it was voluntary. To avoid

conflict with the professional relationship with the therapist, they contacted me directly

via email if they so chose to participate.

The occupational therapist, after verbal agreement to participate, received an

informed consent and explanation of minimal risk via email that was returned

immediately. The occupational therapist then received the invitation for parents to

participate. Only parents with children diagnosed with SPD were provided the invitation.

Parents who contacted me were then emailed an informed consent and the minimal risk

that was to be signed, emailed, and returned to me.

Participation and Data Collection

After participants agreed to participate in the study and signed the informed

consent, they received an email containing an introduction and an attachment with a

series of open-ended questions that were designed for this study and will be responded to

in written or typed format, or via a semi-structure phone conversation. Providing multiple

30

ways such as mail, email communication, and phone responses for collection regarding

the parents/ caregivers open-ended questions was necessary. The occupational therapist

suggested that for various reasons, parents/ caregivers may need to be offered multiple

routes as listed prior when responding to open-ended questions due to hectic schedules of

parents with special needs child and the possibility of being unwilling to meet someone

new regarding further questions involving additional explanation of their special needs

child. Due to various options, all participants were provided multiple contact venues

including phone numbers, email contact information and mailing address in case any

additional questions or concerns that develop. The contact information for dissertation

chair and Walden University’s contact information was additionally provided in case of

emergency related to the study.

Data Analysis Plan

To assess the experiences of the children diagnosed with sensory processing

disorder and their families, semi-structured phone interviews and email responses were

accepted. The initial data analysis developed initial codes that were furthered expressed

by themes of the experiences. Within those themes, categories for each developed and

were expressed by the occupational therapist and the parents. There was no analytic

software utilized for data expression, and all experiences were turned into transcripts

within a word document.

Issues of Trustworthiness

There were several limitations to the proposed research that may challenge the

credibility and transferability of the results. First, there was limited number of

participants who met the inclusion criteria in the rural area of northeast Pennsylvania.

31

This limitation could have impeded the availability of data to be collected. Also, the

researcher relocated to a new state during the dissertation process and as such the

researcher’s location and access could have also impacted the results to other locales and

family experiences with an alteration in the collected data approach. The researcher used

member checking and audit trails to demonstrate the dependability of the findings. In

addition, consideration of researcher bias based on having 2 children diagnosed with SPD

needs to be considered.

Ethical Procedures

Institutional review board (IRB) reviews aid in the protection of study participants

(Connelly, 2014). It is the IRB that oversees the protection of all subject participants,

both human or animal, and specific attention is given to possible vulnerable populations

such as; children, elderly and those part of special populations (Connelly, 2014). This

study does not include any participants from vulnerable populations. The study will abide

by all affirmed institutional review board and federal guidelines. Providing an informed

consent is critical to the research process (Connelly, 2014). The participants in the study

will be given research study information in writing or via email communication. By the

occupational therapist and the parents/ caregivers signing the informed consent, all

participants in the study are confirming their understanding of

all procedures, possible risks, and benefits regarding their participation. Within the

informed consent, there will be a statement of participants’ rights that will allow them to

withdraw contribution and involvement in the study at any time. To aid in maintaining

the integrity of the study, participants will be allotted the opportunity for a debriefing of

the study. The researcher, via phone, will provide an overview that is applicable to both

32

the occupational therapist and the parents/ caregivers. The discussion will provide an

overview of the study including; nature of the study, required informed consent, and any

concerns related to the study. Personal contact information, as well as directions for

contact with the dissertation chair and Walden University are included in the Informed

Consent form (Appendix A). Data will remain on a password protected file for 5 years

after the completion of the study. After the 5 years, the data will be destroyed at its

location of storage.

Summary

In chapter 3, the research questions that provided the foundation of this study are

expressed, in addition to explanation of research design, description of approach and

methodology, and participant information was explained. The expectation regarding the

proposed research was an addition to current works of literature. It provided an

exploratory study from an advocacy perspective using a basic qualitative design. It

focused on the social phenomena that brought needed awareness for children who require

services due to their sensory processing disorder and the challenges faced from the

perspective of an occupational therapist and their parents/ caregivers.

33

Chapter 4: Results

The purpose of this qualitative study was to investigate experiences of an

occupational therapist and parents regarding children with SPD. Data were collected and

analyzed in order to answer the research questions:

Research Question 1: What is the experience of children diagnosed with sensory

processing disorder in the areas of social relationships and school performance?

Research Question 2: What is the experience of families living with children

diagnosed with sensory processing disorder?

Chapter 4 includes a description of the data collection and analysis procedures for

both the occupational therapist and the parents (n=5) living with children diagnosed with

SPD. A description of the thematic analysis is presented, followed by a description of the

results and summary of how the data addresses the research questions. Chapter 4 is

segmented into three additional sections. The following section are inclusive of general

descriptions of the participants in the study. Next, I include a brief look at the qualitative

methodology and the use of thematic analysis, including the data presentation. The final

segment includes a summary of the chapter.

Settings

The original study was designed so I would conduct face-to-face interviews with

the participants. Due to relocation during the process, I altered the data collection method

from face-to-face interviews to phone conversations and e-mail communications. What

was missed was being able to see the nonverbal communication that can enhance the data

collection experiences; however, the e-mail and phone conversations afforded more

34

prolonged contact that was essential for collecting rich, thick descriptions (Creswell,

2007).

Data Collection and Demographics

The occupational therapist worked in a rural are in northeast Pennsylvania. She

had been working with and specializing in the area of SPD for over 25 years. Collection

of the experiences was completed via e-mail communication.

The four parents who participated are referred to by code number Parent 1 (P1),

Parent 2 (P2), Parent 3 (P3), and Parent 4 (P4). The parents who volunteered to share

their experiences for the study were all from similar circumstance. They all lived in

Northeast Pennsylvania, had children diagnosed with SPD, and three of the four parents’

children were school-aged; the other was younger than 5 years of age. In addition, three

of the four children had siblings, and one was an only child.

Parent 1 was the parent of a non-school-aged boy who was diagnosed with SPD

as a stand-alone diagnosis. Other diagnoses had been discussed with their pediatrician;

but, no formal diagnoses had evolved from the conversation or evaluations. P1 had been

receiving services for her child for 8 months at one time per week. The diagnosed child

had siblings who do not share this diagnosis and were not experiencing other

psychological or physical issues. The parent was a physical therapist and “works with

pediatric occupational therapists.” Being able to seek support, she felt, was easier for her

than others, due to her education and professional background.

Parent 2 was the parent of a school-aged female who was diagnosed with SPD,

and a comorbid of autism spectrum disorder (ASD). P2 had been receiving services for

her child for 7 years, 3 months, for once-a-week sessions with the private occupational

35

therapist. Her child also received additional school services. This child had additional

siblings at home. The parent did not discuss employment, but did relay that having her

daughter and all therapies needed had required her to be more than a full-time mother.

Parent 3 was the parent of a school-aged child. Her son was diagnosed with SPD,

with multiple comorbid diagnoses including attention-deficit hyperactivity disorder, and

hyperacusis. Her son had been receiving occupational therapy for “approximately 2

years,” and once a week during that time. She also stated that she had other children.

Although employment was not discussed, she considered being her son’s advocate for

school and being the main parent to take to therapies was a full-time job.

Parent 4 had a school-aged child. Her son’s diagnosis was SPD, and it coincided

with other comorbid diagnoses; but, the parent preferred not to share the additional

information. Her child had been receiving therapeutic services for 2 years and 3 months.

He was an only child, and the parent had opted to homeschool due to “on-going

challenges and poor circumstances” within his school setting. With his “meltdowns”

described as multiple times daily and consistent, being a full-time parent was her “first

job.”

Data Analyses

The interview data were analyzed using the thematic process as described by

Braun and Clarke (2006). The analysis process was conducted and originally written by

hand’ then, the information was then transferred MSWord™, version 10. The analytic

review began with the initial read-through of the written notes taken from the phone

conversations and returned written data regarding the occupational therapist and parental

36

experiences. After a minimum of three rereads of data, initial codes were developed, as

well as basic impressions that were associated with the data codes.

The next step was to officially develop recognizable data codes. Various

prospective codes were initially highlighted, as the initial codes seem to emphasize

multiple interesting factors of the topic explored for the study. After reading and listening

to the interviews multiple times, approximately 40 codes– words, phrases, and sentences

were identified as meaningful moments, experiences, descriptions, or memories.

Examples of codes included stress, struggles, support, schedules, frustrations, and

exhaustion. A complete list of codes is provided in Appendix A. As each interview was

coded, the process of audit was completed. The audit of the data analysis process was

completed in a separate journal and included insights or ideas as to how these codes

could be combined, and how they might relate to the research questions.

Because there were so many codes, an interim synthesis of moving from codes to

categories was completed. Categories reduce the number of different pieces in order to

reveal possibilities for commonalities and further reduction (Silverstein, Auerbach, &

Levant, 2006). As shown in Table 2, 14 categories were eventually grouped into four

themes: family dynamics, support impact, emotion and balance, an SPD child.

37

Table 2

Organization of Categories and Themes

Family Dynamics Support Impact

Emotion and

Balance A Child with SPD

Revolving ‘real’ life

around needed

schedule

Occupational

Therapy Guilt

Interruptions and

struggles

On-going conflicts

between parents Academic Support

Living with

increased stress Social relationships

Loving ‘through’

the diagnosis

Additional

Services

The struggle for

balance among all

family members

A day in the life…

Missed or clouded

memories

Today’s society

lives a fast-paced

life

After creating the categories, I began to search for common themes. Excluding

potential sub-themes and themes that did not warrant substance, I discovered statements

that were organized into significant components that related to the exploratory nature of

the study. Examples of these were categories including occupational therapy, academic

support, and additional services, which were repeated and led to the development of the

support impact theme.

Thematic Analysis

Family Dynamics

Family dynamics was the first theme and expresses the experiences described by

both the occupational therapist and the parents as they reiterated the massive impact felt

within the family environment. The categories for this theme included challenges of the

pressures of ‘real life’ while trying to maintain sometimes a very needed, rigid schedule,

38

and on-going conflicts between parents: loving through the diagnosis to look beyond the

behaviors; and a grave emptiness that exists because (a) the family has to miss so many

events or (b) event memories are clouded by the child’s particular behavior at the event.

Revolving ‘Real’ Life Around Needed Schedule. Parents consistently reported

the struggle to manage the day-to-day activities around the SPD child’s need for

scheduling. Parent 1 stated, “I feel most challenged to plan out each day just to try to

prevent issues.” Parent 2 said, “As a family, we miss out on family gatherings because of

our child’s behavior.” Parent 3 stated, “transitioning from one activity to another is a

major stressor for all family members,” and Parent 4 discussed the difficulty of having to

micromanage every aspect of family life in an attempt to help her child cope with the

severe texture issues (e.g. removing various tastes from the menu and smells from the

house). This parent reported that if this was not completed successfully, the “stress levels

of our family all shoot through the roof and I feel like I walk on eggshells every day.”

The occupational therapist verified the parents’ experiences in describing that “for

these families, life is an emotional roller coaster.” This is supported by the conversations

with the parents as well. The occupational therapist and parents all expressed the

increased levels of exhaustion that coincided with caring for a child with SPD. In sum,

the analysis revealed the dynamic and turbulent family life that juggled the need and

desire to ‘live’ in the real world (maintain jobs, meet other family expectations) with the

micromanaging life on a minute-to-minute basis to create a positive environment for the

child with SPD.

On-Going Conflicts Between Parents. The stress that this puts on parental

relationships was summarized by the occupational therapist:

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All too often I see families that were torn apart, and literally this usually occurred

on multiple levels. It can occur between the 2 parents, a parent and child, or even

between siblings of the diagnosed child that are struggling to understand and cope

with their siblings’ challenges. In my practice, you typically would see one parent

over another that is the one that consistently brought the child to therapy, and was

usually not due to work/scheduling conflicts. One parent always seemed to

struggle more than another. I also have had multiple children receiving services

that parents were divorced, and in passing, the final word was always blamed on

the stress created by their special needs child.

Parent 1 shared detailed experiences of on-going conflict and challenges within

her home. She says, “It was challenging for my husband to understand . . . [and] he was

not patience with our son.” She continued to explain that it was more complicated

because the diagnosed child’s sibling is younger (3 years old) and in an attempt to make

things work, “she often had to go with the flow and she was now acting out and

mimicking her older brother.”

Parent 2 and parent 4 were more general in their responses referring to the stress

that occurred between parents if not in agreement on approaches to settings and events

when dealing with behavioral struggles, and continually trying to develop new and

creative strategies to handle their child. Being able to agree on these continually, “Proved

to be very difficult.” P3 preferred not to respond to the question.

Loving ‘Through’ The Diagnosis. The occupational therapist conveyed repeated

parental concerns that included the struggle of not only caring for their child with sensory

struggles, but being able to see their child instead of seeing just a diagnosis. She shared

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that when parents were living in it, meeting needs of the child and their family, and

integrating all other responsibilities; “it could be difficult to not just see, hear, and breathe

a diagnosis.” There were also a host of emotions, usually negative, associated with this

action. Parents may have “felt guilty and self-blamed to their own detriment.”

All parents conceded that some days more than not, they were so worried about

getting through their days, and planning and managing circumstances to help their child,

that the exhaustion and guilt of not being able to split time appropriately with all family

members was overwhelming. It WAS the diagnosis that “guided our daily lives,” state

P2.

Missed or Clouded Memories. This category revealed 2 dimensions, described by

both the occupational therapist and the parents. The first dimension referred to the

feelings of loss encountered by parents who “could not go out publicly, partake in family

gatherings, and could lose touch with what was once thought to be close family and

friends.” (OT). Many participants reported that the stress of preparation to attend various

events could exhaust a parent prior to the event itself.

This situation could take its toll on the strongest of families. In the event they

made it to the birthday party, family reunion, or otherwise, these families almost

always dealt with a meltdown, or even multiple meltdowns, while attending an

event (OT).

In many instances, parents reported that repeated scenarios of avoidance, last

minute cancellations, and not enough preparation time (“… to actually get the child out

the door” as stated by P1) interfered with attendance and reduced opportunities to

participate over the years.

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Second, the occupational therapist explained that many families were still facing

the traditional stigma associated with bringing a special needs child to an event. She

stated that the parent or parents self-blamed for “it happening to their child”, and were

continually asked questions such as, “When was he/she going to get better? Will they

always act like this?” (P1) or heard comments like “it was not real, it was just your

parenting style that caused this!” (P4) In some cases, the experience of stigma would

come from the immediate or greater family, where blame is placed upon the non-

biological related parent.” In fact, the experience or fear of stigma was present

throughout the content analysis process in association with times where the family or

parent and child had to interact with the world external to the family system.

In sum, participants shared an overwhelming and complex set of thoughts,

feelings and experiences that expressed the theme of family dynamics that were affected

when caring for a child with SPD. The requirements of adherence to a schedule and need

for constancy interacted with daily life normal adjustments and changes and contributed

to a chaotic family system. The occupational therapist compared it to “A Tale of 2

Cities,”; and all parents seemed to agree that caring for a child with SPD was a

‘bittersweet’ life.

Support Impact

Support for special needs children, inclusive of those diagnosed with SPD, came

from various avenues and in multiple arenas. This typically includes the following types

of support: occupational therapy, speech therapy, therapeutic staff support, and an

educational team associated with an individual education plan (IEP) or a 504 plan of

action. The occupational therapist and all parents concurred regarding the importance of

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therapeutic support being integral for moving a child with SPD forward. The greatest aid

for a child with SPD was occupational therapy, as this was reiterated over and over by all

parents during the phone conversations.

Occupational Therapy. As an occupational therapist diagnosing and treating

sensory processing disorder, the first and most critical detail was to provide sensory

inventories to the parent (and to the child if old enough to provide their own responses).

Tools utilized to evaluate the child included the Sensory Integration and Praxis Test

(SIPT) (Ayers, 1989; Ayers, 2005; Brown & Dunn, 2002; Dunn, McIntosh, Miller, &

Shyu, 2002; Miller, 2012; & Parham, Ecker, Kuhanek, Henry, & Glennon, 2007), a

parent screening on the Sensory Profile (Ayers, 1989; Ayers, 2005; Brown & Dunn,

2002; Dunn, McIntosh, Miller, & Shyu, 2002; Miller, 2012; & Parham, Ecker, Kuhanek,

Henry, & Glennon, 2007), the Short Sensory Profile (Dunn et al., 2002), the Sensory

Processing Measure (Ayers, 2005; Brown & Dunn, 2002; Dunn, McIntosh, Miller, &

Shyu, 2002; Miller, 2012; & Parham, Ecker, Kuhanek, Henry, & Glennon, 2007), and

clinical observations.

SPD is “recognized by a unique set of sensory symptoms, yet can often remain

undiagnosed or misdiagnosed”, according to the occupational therapist. “It was ADHD

first, then ASD that were the most often of misdiagnoses. From my view this occured

approximately 50% of the time.” Families usually

found me, and other occupational therapists, when the child consistently had

repeated meltdowns at a very young age. These ‘meltdowns’ far surpassed a

typical tantrum, could appear to be for no reason, were consistent, and lasted

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hours or even carried over day-to-day. They were extreme and most often

unexplainable till a parent sought support and began to get educated.

The occupational therapist conducted sessions with the child, although often times

also became the main support of the parent as well, providing explanation, tools,

education, and more on a weekly basis. Early intervention usually consisted of a more

encompassing approach, multiple therapists and a minimum of 3 days a week for sessions

and were usually conducted in the home.

I know longer did early intervention, so parents typically brought their child to me

and more times than not, therapy consisted of one day a week. This was in part

due to the difficulties with insurance, as sensory processing disorder as a

standalone diagnosis had not been added to the latest edition of the Diagnostic

Statistic Manual (DSM-V), so unless children had a co-morbid diagnosis it could

be difficult to get covered by insurance companies. Individual deficiencies such as

gross and/ or fine motor delay could be coded separately, but may not have been

the root of the struggle and challenges that existed for the child, and inevitably

their families.

All parent conversations conveyed the vital importance of occupational therapy

for their child, and for them as the parent.

P2: Therapy was indispensable!

P1: [the occupational therapist that provided the most] substantial education and

necessary tools to support their child with SPD… while also providing family

guidance and parental support.

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Parent 1 continued to explain that she did not know where she, or her child,

would be as

she [the occupational therapist] was the only true local support system I had. I

wish there was more knowledge for pediatricians, teachers, and other parents, and

that I had a local support system . . . or even just one other mom to talk to and

share struggles, situations, and stories.

P2 and P4 expressed that it is the occupational therapist that had provided them

and taught them to utilize “creative ways to support and help their child” (P4). P2

explained that she “feels therapy is a place to push a child with these struggles outside

their typical boundaries so they can have ‘controlled, repeated exposure’ to necessary

situations that could only happen in therapy.” The occupational therapist and all parents

expressed that therapy could help and support a child with SPD and their families. The

occupational therapist also noted that progress was “also dependent on how much support

they got from a school environment as to how well they can truly do.”

Academic Support. The most consistent comment made by parents was the lack

of understanding in the school system regarding how to work with SPD children in the

classroom. P? indicated that many schools were not are not familiar with SPDP noted “a

lack of friends and schools did not understand my child.” Often times a child was labeled

according to their behavior, while not addressing the source of their struggles. The OT

therapist noted:

For example, if a child consistently fidgeted in a classroom, the proper way to

address the situation was not to teach a child ‘not to fidget’, it has neurological

advantages for the child to fidget, but instead provide them a tool belt that

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allowed them to fidget appropriately and quietly within the classroom setting.

This helped the child’s neurons fire, stay focused, and not be disruptive. It was

truly unfortunate that most teachers [and their schools] did not have a true

comprehension of this or other pieces to this umbrella term

She went on to explain that, “good school districts had an occupational therapist

in the classroom assisting the teacher to make it sensory friendly and to maximize the

functioning of all children”.

Parent 2 clearly expressed the same feelings as Parent 3 and Parent 4, and stated

that the diagnosis “always seemed to be seen as behavioral rather than neurological.”

Parent 2 and Parent 3 both conveyed that teachers ‘simply did NOT understand [my]

child or the diagnosis.” Parent 4 was unforgiving in her response to the question ‘How

has your over-all experience within the academic setting been pertaining to meeting the

needs of your child with SPD?’ She simply stated, “POOR! THAT IS WHY WE NOW

CYBERSCHOOL!” [Capitalization hers]. Choosing to cyber-school seemed liked the

only alternative:

… as teachers, administration, and staff repeatedly showed that they did not

understand my child, his needs, and his diagnosis. Cyber-schooling could still prove

difficult some days, but so many of the additional challenges that was keeping him from

absorbing the content had been removed. Now he was learning and was far more

successful academically speaking

Parent 2 still had her child enrolled in a traditional school setting, but stated that:

they were NOT helpful because they COULD NOT and WOULD NOT make

necessary, and even sometimes recommended or federally mandated, exceptions

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and accommodations that were necessary to help the child find success in the

classroom. If teachers were educated, they would be able to effectively address

the issues of my child, allowing him to absorb what they were learning.

With similar experiences, Parent 3 expressed that a joint effort would be

beneficial to both the child and the classroom setting. However, “the implementation of

his plan did not get followed as most teachers did not have an understanding of my child

or his diagnosis. They did not seem to care to inform or educate themselves either.”

Various teachers could provide different experiences and with diagnoses of associated

learning struggles increasing in prevalence rates, a person was far more likely to have an

experience with a teacher whose own child struggled with a diagnosis. Parent 3

continued:

My best teacher experience was a woman whose son was diagnosed ADHD and

both recognized and reported problems or areas of concern that otherwise would

have gone perhaps unnoticed. Unfortunately, this was the only positive experience

to discuss within the academic setting for my child; the rest had been a struggle. I

did, however, continue to consistently advocate for him as much as I felt needed.

Parent 1 had a child that was not school-age and did not partake in this part of the

study. She did comment however, “I am looking forward to reviewing your study when

complete, in particular, to see what challenges could be headed my way in regards to the

academic setting.” The occupational therapist and parents 2, 3, and 4 all conveyed similar

disappointment and frustrations within the academic setting. It was expressed that

working jointly would be the best route for benefits to the diagnosed child, but the

occupational therapist stated that, “it was very difficult to even talk to an educator

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regarding a student, and with the current HIPPA laws; it could be very complicated to

work in a holistic approach on behalf of the child.” The parents that currently have

school-aged children diagnosed with SPD supported a lack of support and a lack of

understanding within the academic experience for their child.

Additional Services. Additional services were often utilized to compliment

occupational therapists to aid in the child’s abilities and over-all current and future

success. All participants utilized a range of services. All participants felt that additional

services a critical piece to the child’s success, and these could be incorporated into the

child’s routine. The education, understanding, and support for parents to help their

children in the best possible realm must be was described as coming from various

avenues and fields, comprising a “pie” of multiple services and supports.

The occupational therapist humbly expressed that she is simply “one piece of the

pie. There were usually multiple people involved in the support and education of child

that was diagnosed with SPD.” Common additional support often came in the form of,

“speech therapy, psychological support, therapeutic staff support, and even additional

home support such as respite care and more, especially when dealing with a child with

multiple diagnoses that encompassed SPD.” It was also explained that if the parent chose

the additional support through the same provider where the occupational therapist

provided services, they could exchange and communicate regarding the child far easier

and jointly develop therapeutic plans. If a different provider was chosen, “which

happened often due to insurance requirements, it could be far more difficult to develop a

cohesive plan to help the child.”

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Parent 1 explained that her son was younger and recently diagnosed, so no other

interventions had been “explored at this time, but assuming there would be in the near

future.” Parent 2 and Parent 3 conveyed that although other interventions and support had

been explored, “scheduling and time can make multiple therapeutic approaches difficult,”

and they both concurred that the occupational therapy approach has been indispensable.

Seeking additional support from the school district was important, but do to experiences

in the academic setting, support from this area was not expected. Parent 4 stated she was,

“disgusted as to how the traditional academic setting handled my son,” and since

homeschooling we had also, “sought out additional support from mobile therapists, a

psychiatrist, and medicinal routes.”

The occupational therapist expressed that, “it could be difficult, as parents of

special needs children were typically already overwhelmed, and even though multiple

forms of intervention are beneficial; the actual process, the wait times, and coordinating a

schedule could be extremely difficult.” The parents all concurred. The group thought

expressed that the more support “the merrier.” All parents stated that they felt the more

scheduling though, especially those with other children, “proved to be very difficult,” and

that was prior to mentioning incorporating work schedules, children’s activity schedules,

and family responsibilities.

Emotion and Balance

The third theme that developed from the semi-structured phone conversations, or

email responses, was the importance of the range of emotion experienced by a parent

goes through caring for a child with SPD, and the constant search for balance in all areas

of life while caring for their child with a diagnosis that often goes misunderstood,

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undiagnosed, or misdiagnosed. The occupational therapist and the parents discussed

difficult feelings of guilt that continued even with services sought, elevated stress levels

that were infused in daily lives, the enduring search for balance that met the rigid needs

of the child while accommodating other family members, and the need to continually find

inspiration for all that is creative to exist in a family with a special needs child.

Feelings of Guilt. Parents of special needs children often suffered through the on-

going feelings of guilt and guilt is a prominent experience of parents of special needs

children (Miller, 2013). Thoughts of wondering if they could have done anything

differently to prevent or help are common, while the mothers struggle even more

especially with sensory processing disorder, as no one scientific-based cause has been

distinguished, and the thought that something was caused in utero is a heavy burden to be

carried forward (Miller, 2013).

The idea that parents of children with sensory processing disorder carried large

amounts of guilt around with them was “probably a mild understatement.” The

occupational therapist continued to explain that:

… it really did not seem to matter how old the child, how long they had received

services, or even where they were located in the sensory umbrella (meaning more

or less severe), every parent seemed to blame themselves for their child’s

struggles. It was something they do upon an initial diagnosis and it did not go

away; they continued to blame themselves. Parents had many questions upon

diagnosis, but the one question that was always asked was, ‘what was the cause?’

And when I could not respond with a definitive answer, you could see a change in

them. It was immediate, and I could always see it from there forward. I saw it in

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their eyes as they asked for updates or had questions about the disorder. Every

time I spoke to a parent, you could see it.

Similar feelings were expressed by the parents. Parent 1 stated,

I did not feel like I had a true understanding of the diagnosis. I felt like it was hard

to grasp, understand, and explain because there were so many variables to the

diagnosis. As a physical therapist, I kind of worked in the field, or at least with

colleagues and I was familiar, and I still struggled.

Beyond the fact that sensory processing disorder was multifaceted and

multileveled, parents often blamed themselves for what their child experienced. “By not

feeling like I truly understood and seeing my child struggle, the feelings of guilt were a

constant. I carried those feelings with me all day every day.” Parent 4 expressed similar

thought to Parent 1, and explained that

…there was so much to the diagnosis, it was difficult to be able to deal with all

aspects that my child may be going through. Feeling like a bad parent or feeling

guilty, and sometimes not even knowing what for exactly, was very hard.

Parent 2, although similar in thought and in complete agreement that the

diagnosis had many facets, unlike Parent 1 and Parent 4 though, she stated,

I did not think I needed any more information regarding the diagnosis at that time.

I tried to approach current challenges with my current level of understanding. I

felt that more information at this point would have been overwhelming and

unnecessary and would have weighed me down more than the guilt that I

struggled with daily. Perhaps as we met new challenges, I could incorporate small

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pieces of information, but having an overwhelmed parent as the caretaker of a

child who is constantly overwhelmed just seemed like a bad mix.

Parent 3 expressed that as her child’s caretaker, advocate, and main connection

with intervention programming, she felt she had a pretty good understanding to help and

support [her] child, but this did not stop the heavy burden of guilt she beared for her

child’s struggles. Filling all of these roles and more was the least I could do, as every

parent wanted their child to experience success.

The occupational therapist and all parents expressed similar thoughts when they

discussed the impact of guilt on parents of children with sensory processing disorder. The

question of “why me” came up, then the parents explained they felt even guiltier even

thinking such. While Parent 3 was clear that she would never be able to do enough for her

child, no matter what role that required her to take due to the weight felt from learning of

her child’s diagnosis.

Living With Increased Stress. The expressions of all participants communicate a

shared experience of long-lasting negative effects to people that suffer with constant,

long-term stress. The occupational therapist explained that unless you are the caretaker of

a special needs child, “you could not possibly understand the amount of stress and worry

these parents go through minute-to-minute, daily, and for a lifetime.” It was conveyed by

the parents that took part in the phone conversations, or responded via email, that their

lives truly ‘revolved around their special needs child’ and putting their health concerns or

stress at the top of a list ‘just never seemed to happen.’

The Struggle For Balance Among Family Members. All families struggled to

find balance in daily routines, schedules, work-family life, and balance among various

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members remained a constant struggle for all to endure. So often, living with a child

diagnosed with SPD affected every member of the family, sometimes on “levels they

could not even recognize.” So many families worked on just getting “through another

day, and that a focus on the future, setting long-term goals, and dreams that traditional

parents have blurred till unrecognizable images.” The parents also conveyed similar

thought, in that the goal was always to ‘make it through another day with as few

meltdowns as possible, and to hopefully get to see their child ‘be a kid’ even if just a little

while.

The occupational therapist worked directly with the child, but also provided tools,

resources, education, and supported for the families, “especially upon initial diagnosis.”

The minimal balance that

… parents thought existed dissipated upon diagnosis. There were multiple

challenges for families with a child diagnosed with SPD. The occupational

therapist said that “receiving a diagnosis was enough for families, but start

integrating therapies, doctor appointments, protocol for insurance companies, wait

lists, filling out required forms in duplication over and over, dealing with school

administration, teachers, and if a parent has other children, even sometimes

multiple diagnosed children; finding any sort of balance seemed like the

impossible task. I tried to, at minimum, reduce the amount of information that

may bombard them all at once. If they could take items more individually,

glimpses of the balance they desire started to appear.

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She continued explaining that it, “really could be a snowball effect, and when one

thing went right and helped bring a little sense of balance, repeating and expanding on it

was key.”

P1, P3, and P4 did not have other children, therefore sibling concerns were not an

issue when trying to find balance within the family structure. Parent 2 expressed concerns

and frustrations regarding with such, that not only was her younger child mimicking her

diagnosed child, but trying to “teach a young sibling to love their sister unconditionally

was extremely difficult. The meltdowns could scare her younger sibling and learning to

love through the diagnosis and the behaviors was extremely difficult to teach and

balance.” In addition to siblings, finding a balance for spouses to even carve out time for

themselves individually and as a couple would seem impossible. The fact that they could

be overwhelmed and disagree on intervention and discipline approaches, have been

dealing with school administrators and faculty, and have job interruptions due to

therapeutic responsibilities could lead to on-going stressors, arguments, and more. Being

able to hold down a full-time job, ensure that a diagnosed child makes it to therapies,

while getting up hours early to “prep the day before you take the time to prep your child’s

day could have you exhausted before they even wake up.” Parent 1 explained that

[I] feel challenged to plan out each day, anticipating certain meltdowns and

challenges, then planning accordingly to prevent issues from arising. Also, my

husband and I planned our lives around our child and his needs. Not only did this

not lead to balance, but often led to disagreements.

Today Society Lives a Fast-Paced Life. Technological advances, shifts in

expectations within family structures (households with 2 working parents), and financial

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stressors have had many living in what appears to be a chaotic world. Adding a child

diagnosed with sensory processing disorder to the situation could alter what balance

families were able to find in current society. The “demands, expectations, and weight felt

by these families leave very little time to organize and find balance,” the occupational

therapist explained.

Theme 4 provided details and data related directly to the children as to the

ongoing interruptions and struggles, existing social relationships, and the view of what a

day in the life looked like in regards to a child with SPD; as reported in the semi-

structured phone conversations, or responses to email, by the occupational therapist and

the parents. The categories developed from common themes as presented by all those that

participated.

The occupational therapist commented that interruptions and struggles were

ongoing and would be a permanent way of life. She stated that

…as children continued to grow and their environments and settings were

continually altered due to time and age, so do their struggles. As environments

change, so do the struggles and it required an entirely new group of tools in their

tool belts to cope as effectively as possible, and just as this changes for the

children . . . it continued to change for their parents also. It brought a whole new

meaning to the phrase ‘the only thing that was constant was change’ for these

parents.

All parent participants seemed to reiterate the same theme, as one parent

commented, “Just as I think I have something figured out, and our daily schedule was

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intact . . . a schedule would get changed, a new setting developed, or all of the above, and

I was simply back at square one trying to figure everything out.”

A Child With SPD

Interruptions and Struggles. The parents and occupational therapists consistently

reported that children diagnosed with sensory processing disorder suffered and struggled

in various ways and on multiple levels. “The diagnosis was so multi-faceted, and no 2

children truly look-alike, or at least the symptomology and struggles vary from child to

child,” stated the occupational therapist. “Although as a therapist there were some

‘overall’ themes to the diagnosis, how one child reacted to a setting, situation, or

treatment could look completely different for another child.”

Considering sensory processing disorder was also a multi-leveled diagnosis, but

children tend to be as smart, or smarter than their peers, children struggled in traditional

settings.

My clients usually ended up with me, not because parents think they have SPD.

Most do not even know what it is. They ended up here [at occupational therapy]

because children tested very high in intelligence, there were behavioral issues that

were typically not defined by other diagnoses, and parents were at their wits end

with a school district. After you have experienced an 8 hour meltdown, or one that

ends by a child eventually falling asleep only to wake the next morning and

continued with the meltdown (that literally can last days), only then could you

begin to understand the magnitude of struggle and interruption a child suffers with

a diagnosis of SPD. The struggles and interruptions were also dependent on age,

and gender to a degree.

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Daily interruptions and struggles were discussed by the parent participants.

Although the interruptions were consistent and considered daily by all 4 parents, the

degree and the specific types of interruptions varied. Parent one clearly listed the most

common interruptions and struggles as poor sleep, getting dressed, brushing teeth,

anxiety from routine alterations, and increased negative behaviors in the late afternoon

and early evening hours. Parent 2 stated that the most common interruptions and

struggles for her child were when there is a change in routine, on-going ‘fights’ over food

choices, getting dressed, and leaving the house. Repeating similar and same types of

interruptions and struggles, parent 3 expressed that most common for her child was when

a change in routine occurs, increasing anxiety in multiple settings, and dealing with the

morning chaos of getting ready and out the door. Parent 4 explained the biggest

interruptions and struggles to her child’s day stems from anxiety in social settings and

multiple environmental triggers including certain smells in the kitchen, textures and tastes

of foods, and a severely limited diet that has led to health concerns. All parents also

stated that the interruptions and struggles not only occurred on a daily basis, but also

happened multiple times daily.

Social relationships. The parents reported consistently that a strain on various

social relationships typically coincided with a child diagnosed with sensory processing

disorder. The occupational therapist stated that the

…strain on social relationships may come between parent-child, child-sibling,

teacher-child, teacher-parent, peers-child, and more. Additional strained

relationships could develop between parents, or even between the parents of the

other child and other caretakers, or adults. We did not, nor did our children, live

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in a bubble, so their behavior that coincided with the diagnosis of SPD impacted

many, in particular when there is a lack of understanding. The lack of

understanding was usually seen from the academic setting, so not only did the

children not thrive, but parents become frustrated and overwhelmed just like their

children.

Parents 1, 2, 3, and 4, all agreed that in a social setting, their child diagnosed with

sensory processing disorder stood out, and usually not in a ‘positive light.’ The child of

parent one was the youngest among the parents and she did comment that he “probably

did not have as much experience as other children in social settings due to his young age,

but I was concerned for his ability to develop deep and substantial relationships in the

future.” Parent 2 explained that her child was “unable to do all the other activities, and go

all the other places her peers go. It was simply too overwhelming.” Parent 3 reiterated

parent 2 concerns. Parent 3 was concerned over on-going ‘isolation and loneliness due to

a lack of ability to fit into traditional social settings, and it was so overwhelming for her

child.” In addition, social settings of every sort became difficult for all, as the common

response was that, “he looks normal,” but then the misunderstanding as to why the child

did not integrate into group settings like other children remained misunderstood. Parent 4

continued and stated, “My son was so misunderstood!” Parent 4 also stated that the on-

going concern in public settings was so stressful for all, and avoidance was now being

used as a coping mechanism. All the words or statements varied in exact verbiage, the

overall theme and categories showed an extremely similar overlap.

A Day In The Life. A day in the life of child diagnosed with sensory processing

disorder could and often was exhausting, frustrating, and overwhelming. For most

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children diagnosed with SPD, waking up began the process of being overwhelmed. Prior

to getting out of bed, a child with sensory processing disorder was already thinking about

all the items they typically struggled with, various settings that could come their way, and

although if younger cannot always verbalize . . . struggled with knowing that ‘their filter

is broken.’

All parents reported that the experience of over-stimulation presented obvious

difficulties for parent and child alike. The struggles could appear to be what looked like a

mild temper tantrum to an ‘all-in’ meltdown that could last for hours. They could be

fidgety, appear nervous, or even ‘tuned-out’ from the setting (Davies et al., 2009).

The occupational therapist explained that children diagnosed with SPD “typically

struggle with and had lower self-esteem and lower self-confidence.” A day in the life of a

child diagnosed with sensory processing disorder also impacted those around them. This

could lead to multiple situations that provided a sense of stress and anxiety for both the

child and parents, and even the siblings if applicable. Sensory processing disorder

remained a large umbrella term, and encompassed multiple struggles and interruptions.

For most this began in the morning. Reported by most of the parents, the occupational

therapist explained,

…most children began with struggles right out of the gate, like as soon as they

wake. The battles of getting a child to brush their teeth or hair, dressing, eat

specific breakfast foods, and get out the door on a schedule was really beyond for

most. It was to the point where some parents I know have quit jobs because it just

became too overwhelming for all involved.

A day in the life of a child with sensory processing disorder

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may also vary and partially be dependent on their support system. The better a

parent understood the diagnosis and the specifics related to their child, mixed with

a lot of patience, the easier the days would fair for the child. This was not to

discount that there still could be ‘those days’ and also, some children were just

more difficult to soothe, treat, and had a more difficult time regardless. Sensory

processing disorder looked a little different for everyone, and there was no such

thing as an ‘all or none’ fix for children diagnosed. What I can say was that the

struggles are very real, they were consistent, they could be similar, and they were

forever. As a child’s environment, expectations, and settings change, so did their

needs, ability to adjust, and possibly more therapy to help.

All parents were in agreement that a day in the life from their child’s perspective

was not easy. Children with sensory processing disorder could wake up overwhelmed and

exhausted and it could be for the day, a month, or even years. Parent 4 explained that

when your child’s “filter is broken, and they hear and smell everything, and taste and feel

things so differently . . . they were going to be exhausted.” Terms and settings repeatedly

highlighted by all parents included increased anxiety in social settings, feelings of being

overwhelmed, being isolated, and frustrations of daily tasks that led to lower self-esteem.

Parent 1 expressed concerns of her child “possibly never fitting in, and just being able to

go with the flow like other children.” Parent 2 reiterated the same feelings as parent one

and stated that her biggest fear was that her child “would never get to enjoy what we call

a normal life. There were so many struggles associated with [the child’s] SPD, that [the

child] lived in a state of being overwhelmed. Parent 3 also supported the above thoughts,

and expressed her “concern for her child now and for [the child’s] future.” Parent 3

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stated, “That my child lives in a constant state of stress with high levels of anxiety. A day

in the life of a child diagnosed with SPD, although may vary from an outside view,

remained difficult for the children struggling with diagnosis.

In summary, the 4 themes capture the challenging and chaotic daily experience of

life with a child with SPD. These represent the child’s individual experience, family,

school, and larger social systems where struggle, stress, and stigma are daily challenges.

Evidence of Trustworthiness

Considering the researcher was the primary instrument in a qualitative study,

researcher bias was inevitable (Shenton, 2004). In addition, the qualitative design was

utilized to collect in-depth data to enhance understanding, yet barriers to the study’s

transferability remained limited. This was primarily due to the limited geographic reach

of the researcher, and the difficulty in potential participants finding the time to spend

talking or emailing their experiences.

To verify my interpretations, member checking of participants data was

completed. Being able to reiterate the summarization of details and data collected to

ensure its accuracy to the participants was an additional step to aid in this process. The

member checking process consisted of the openness to return at any point for clarification

if needed, and allowing the parents who were contacted after data review, and provided

the opportunity to make adjustments if needed to understanding of the data analysis.

Member checking was defined as seeking the perspectives of members regarding the

accuracy of any and all data, descriptions, and interpretations (Richards, 2003). When

complete and a feeling of saturation of data and its accuracy was obtained, it was

determined to move forward with the data.

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The dependability and confirmability of the data were maximized during the data

collection and analysis process. Interviews were taped, and copious notes were taken to

insure the accuracy of the data gathering process.

In addition, Shenton (2004) discussed the importance of researcher credibility for

qualitative research, as the researcher is the primary instrument for data collection. The

researcher had 15 years working with children with sensory processing disorder, of which

more than 4 years was in a therapeutic circumstance. The researcher also was the

facilitator of a parent support group for more than a year, for parents with children with

sensory processing disorder, and has provided educational presentations regarding

sensory processing disorder in an academic setting to K12 faculty.

This study explored and examined the experiences of an occupational therapist

and parents of children with sensory processing disorder. The one occupational therapist

and the 4 parents who participated in a semi-structured phone conversation, or email

responses, and conveyed their experiences, thoughts, and opinions regarding the impact

of SPD on their child’s social relationships and school performance, as well as the impact

on families living with children diagnosed with SPD. Significant statements were

expressed by all participants regarding the experiences associated with a child diagnosed

with sensory processing disorder.

Themes explored within this study were inclusive included: family dynamics,

support impact, emotion and balance, and simply the child with SPD. They shared

experiences from all participants’and uncovered important and detailed data. In answer to

the first research question, the results of the thematic analysis revealed that despite the

diagnoses unique and changing manifestations, there was a common experience of the

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children’s general lack of ability to connect across and within different settings; i.e., the

family, school, and other social settings. A child may struggle with many sensory inputs

– loud noises, temperature of the setting (too warm or too cold), the number of people in

the setting, light (not enough or too much light) – but the results showed a consensus

among parents and the occupational therapist that the “overwhelm” from their

environment interrupts, inhibits, and breaks down the child’s ability to communicate,

meet behavioral expectations, and act age appropriately across multiple settings.

According to the results, the parents were in agreement that the challenges within

the family structure with, for, and because of their child included the family as a unit,

sibling-to-sibling relationships, and parent-child relationships. This was made more

complicated depending on the family structure, and if other siblings perhaps also had a

diagnosis. The parents revealed that it is multi-layered, “and just when you feel you have

something figured out, whether a setting or situation, the environment changes again and

[they] are back are square one.” With the consistent changes in an environment, age of

the child, or settings they are exposed, the challenges create a chaotic and confusing

world. When the child’s attention is focused on what is new, how to handle, or even how

to remove themselves from a particular setting, social cues may often be missed,

overlooked, or misunderstood completely.

The results also revealed that a school setting provides some of the most difficult

challenges. The parents conveyed that the school district, and specifically teachers, are

not educated about SPD and revealed that they felt that teachers ‘had no idea how to

appropriately provide needed accommodations for [their] child.’ Challenges also existed

directly for the child to handle environments that are typically overwhelming. Because

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they can be socially awkward, ‘they tend to suffer at the hands of the class bully.’

Homeschooling has become a popular choice, as it helps to control for some of the

additional challenges that exist in a traditional classroom, and provides the child

diagnosed with SPD an opportunity to concentrate on actual learning.

In answer to the second research question regarding the experience of families

living with children that are diagnosed with sensory processing disorder, the results of

this study indicated the common themes, such as transitions, missed events, and family

conflicts. A major struggle within this community were transitions, and when trying to

move the family to needed activities and responsibilities, and the child diagnosed with

SPD is unable to transition, the struggle is very real, meetings and appointments are often

missed, and being left out in future invitations is a constant within this community.

Missed events, although common, is not even the most difficult struggles, but clouded

memories of events dampened by an SPD meltdown pervaded all of the recollections;

e.g., family accusations and judgements from lack of understanding, and a consistent

removal of the SPC child, or the family leaving an event early due to social or behavioral

inappropriate actions.

In addition, the occupational therapist and the parents discussed conflicts that

developed between parents because of their SPD child. The OT stated that it is

consistently the ‘same parent that partakes in therapy’ for the child, and data showed that

the parents reported having ‘very different viewpoints and strategies’ based on who was

the primary caretaker, who was more involved in the therapeutic process, and who was

the more removed parent. The differences not only wreaked havoc on the family

paradigm, but led to a divorce also.

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In sum, the results of this study present a rich and poignant representation of the

life of families with a child diagnosed with SPD. Chapter 5 presents the results in relation

to prior literature so that meaningful conclusions are identified and presented. In addition,

possible challenges to current data and the importance of adding to current literature are

explored. Lastly, the direction for future research and the possibility of advocacy and

intervention are examined.

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Chapter 5: Discussion, Conclusions, and Recommendations

This exploratory case study was conducted to help identify and explain the

experiences of an occupational therapist and parents of children with SPD. The rationale

for such a design is supported in the scientific community and now is a leading

methodological approach (McBride & Schostak, 2008). Maxwell (2005) noted that it is

this approach that allows a researcher to focus on a sole target group when needed.

Chapter 5 provides a summary of the results that developed from the occupational

therapist and the four parental, semi-structured phone conversations, as well as how the

findings of the study can be applicable to the questions of the research.

In this chapter, I will also revisit the literature review completed in Chapter 2 to

provide an update on current research that only became available during this study. This

chapter will also provide elements of the basic qualitative design and the thematic

analytic process, express possible limitations related to the study, and interject potential

thoughts for associated future study. Chapter 5 is designed to guide the readers through

the interpretation of the data, provide conclusions specific to the study, and serve as a

reference for future scholarship.

Interpretation of the Findings

The study was a basic qualitative design based on an exploratory study from an

advocacy perspective. The design of the study was developed to examine commonalities

of children diagnosed with SPD and to provide detailed thought from the children’s

occupational therapist and their parents/ caregivers. Using qualitative methodology

allows a subject to be viewed in depth. This was completed via a thorough description of

the social phenomena, and aided in theory development (Casey et al., 2013; Cope, 2014;

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Strauss & Corbin, 1990). A basic design was appropriate for this exploratory study, as

this phenomena had not yet been explored. I established direction and understanding to

the development of theory related to social phenomena of SPD.

The first theme developed out of the data led to discussions that surrounded

family dynamics with at least one child diagnosed with SPD within the family unit. The

occupational therapist and the parents in this study were all impacted by the struggles

associated with caring for a child diagnosed with SPD. A child with SPD demands a

structured schedule to aid with success in various areas of life, and being able to revolve

life around this schedule posed considerable challenges to the families involved. An SPD

child is faced with massive challenges when transitioning which leads to ongoing

interference when trying to meet demands of timed events. A parent getting to work on

time and getting the child to brush his or her hair or teeth creates meltdowns and makes

the child late for school more times than not. Helping siblings meet appointment times

and expectations are usually and abruptly interrupted by the SPD sibling. As the stress

increases from repeated struggles, parents reported having conflicts between their spouse

that may or may not have even been related to the source of the struggle. When the

challenges are ongoing, and numerous, the occupational therapist stated, “losing sight of

the real struggle is easy.” In addition, the occupational therapist and parents stated that it

can be a struggle to continue loving the child through the diagnosis when the parent

knows that the challenges are always going to be there, and they are exhausted from

meeting the demands of life with a special needs child. This aligns with prior studies

wherein authors discussed the unique set of sensory symptoms displayed by the children

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diagnosed with SPD and the dynamics that result (Ayers, 1979, 2005; Kraus, 2001;

Miller et al., 2009; Parham, 1998).

Having a child diagnosed with SPD presented significant challenges and

commanded the need for support. The second theme encompassing both the need for, and

sometimes the lack of awareness for support, was reported as critical to positively

impacting the child with SPD and his or her success in various settings. Parents stated

that occupational therapy “was priceless,” where support in an academic setting remained

a challenge due to a lack of knowledge, training, and tools. Additional services were

remanded by the child’s needs and included areas such as speech therapy, psychological

support, therapeutic staff support, and various forms of home support. The occupational

therapist referred to herself as “one piece to the puzzle” to aid in the child’s success.

Miller (2013) explained that SPD is both multilayered and multifaceted; there are

definitive physiological differences between children who are and are not diagnosed with

SPD, rendering challenges to meeting of milestones for SPD children (Ayers, 1979,

2005; Kraus, 2001; Miller et al., 2009). This supports the demand for social support from

various avenues.

The third theme that evolved from the data was related directly to the areas of

emotion and balance. The occupational therapist and the parents stated that their daily

lives were negatively impacted by feelings of guilt and added stress associated with their

SPD child and that the struggle to obtain, then maintain, a sense of balance within the

family structure seemed an impossibility. The parents agreed that the challenges of SPD

are on-going because a child continues to age, creating different challenges. Settings

continue to alter day-to-day and year-to-year, creating a constant cycle of starting “at

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square one.” These finding aligned with multiple authors as they described a child

diagnosed with SPD as a child who ‘does not fit in easily’ (Ayers, 1979, 2005; Kraus,

2001; Miller et al., 2009). With traditional living entirely removed from the family

equation, emotion and balance were considered a consistent struggle.

In Theme 4, the occupational therapist and the parents reported that their child

diagnosed with SPD is negatively impacted with daily struggles and interruptions and

poor social relationships. Although there are overall themes for children diagnosed with

SPD, under a metaphorical microscope, SPD remains an umbrella term, and no two

children and their challenges look identical. Transitioning, environmental settings, lack of

routine, textures, tastes, sounds, and more can all set the backdrop for an SPD child that

creates pandemonium. Miller et al. (2007) identified common red flags. A brief review of

the common struggles and interruptions for an SPD child does not encompass the entirety

and brevity of many additional challenges, as explained by the multiple subgroups, SMD,

SBMD, SDD (Collier, 2008; Kraus, 2001; Miller, 2012).

Limitations of the Study

There were multiple limitations to this study that future studies could improve

upon. First, the sample turned out to be homogenous, as it was all Caucasi mothers with

children diagnosed with SPD who responded to the initial invitation to participate; the

occupational therapist was also female. No input from fathers or other male figures were

included. No minority families were included. All were receiving services from the

occupational therapist, and all were from a rural area of Northeast Pennsylvania. Another

limiting factor to the study included my relocation during the middle of the study and the

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original design that included face-to-face interviews to collect the data. Without the face-

to-face contact, only limited emotion supporting the data was available.

Recommendations

Future research studies are encouraged to increase the size and diversity of the

sample if possible, to explore if demographics and ethnic variations revealed variations in

the day-to-day experiences and struggles of families with and SPD child. It is also

recommended that fathers or male guardian figures be included. In addition, perspective

of experiences from multiple occupational therapists would be recommended. Also,

future studies should encompass a broader area in which to obtain participants in order to

aid with transferability of the study.

Implications for Social Change

This study was intended to serve as a catalyst to encourage social change

regarding the lived experiences of children with sensory processing disorder and their

families. Regarding sensory processing disorder, it may prove most beneficial for those

with diagnosed children to be able to receive needed support, both personally and

professionally. This remains a current obstacle due to lack of awareness and

understanding from family and friends, and lack of recognition on a diagnostic level for

treatment. Without further action, parents are likely to remain feeling frustrated,

overwhelmed, and alone, while professionals are likely to continue to feel parents pangs

when trying to provide needed services for the benefit of the diagnosed child and their

families.

By expanding the knowledge base that reflects the experiences of children with

sensory processing disorder, parents will have the opportunity to understand that they are

70

not alone on so many of the commonalities (struggles, frustrations, rigidity) experienced,

be provided perspective and direction from the occupational therapist, and support the

current movement that encompasses local community and beyond, and inevitably help

with the addition of sensory processing disorder to the next DSM.

Common themes that developed from the data showed that the commonalities

were experienced by children with sensory processing disorder and their families. Four

vivid themes developed from the data. The first, and clearly stated theme from both the

occupational therapist and the parents was that the family dynamics and structure were

massively impacted, and interruptions were a way life. The second theme regarded the

ability to successfully seek out and obtain support proved difficult, and was not typically

through what would be considered mainstream routes. Next, the families strived,

although not often achieved, for life balance. They hoped that the balance would come in

multiple forms including some peaceful moments that would allow their diagnosed child

to ‘simply be a child,’ and balance for their demanding schedules, and an ability to meet

the expectations of maintaining husband/ wife relationships, career expectations, and

inevitably ‘having a life.’ Lastly, a true overview as to what a day-in-the-life looks like

for the child diagnosed with SPD. Explanations of the consistent interruptions and

struggles were expressed.

Conclusion

This basic qualitative designed study highlighted the lived experiences of

children with sensory processing disorder and their families. As an exploratory study, the

design allotted for a range of flexibility that provided an in depth view of the social

phenomena from an advocacy perspective. The developed themes, and then categories

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that developed left the researcher with a deep sense of connectedness. What profoundly

emerged from the analysis of the data was that the children diagnosed with sensory

processing disorder, struggle similarly, and the parents of the diagnosed children are

doing the same, encompassing feeling alone, frustrated, and overwhelmed. A mutual

respect for all involved in the day-today processes that help provide children diagnosed

with sensory processing disorder the structure, patience, and understanding required to

not just survive, but thrive through their days.

The findings of this study revealed that the family dynamics were substantially

impacted. Children struggled with day-to-day tasks that other children do not, parents

struggled with the rigidity and patience required with their children and each other, and if

a sibling was involved, getting ‘shafted’ due to the time, focus, and energy required for

the diagnosed sibling was a common experience. The occupational therapist felt that

trying to maintain a positive family dynamic with a diagnosed child was exhausting to the

entire family unit. Finding, having and continuing support in multiple settings for the

child and their family was declared critical to provide help for the child, and needed

education and aid for the families of the diagnosed child. Common, as stated by the

parents, was a lack of understanding of the diagnosis in an academic setting, which intern

drove the consistent need for support in other realms of life. Sensory processing disorder

is an umbrella term, complicating the ability to understand and educate yourself as a

parent.

The multifaceted and multileveled diagnosis provided ongoing frustrations for the

parents because just as they felt they had ‘mastered’ a struggle, the child’s age,

environment, and/or needs changed, and starting from square one over and over in life is

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beyond any typical term associated with being an ‘exhausted parent.’ With unmeasurable

stress levels within the family unit, finding balance daily, or even weekly proved to be

yet just another daunting task to add to the ‘list of goals that will never be.’ Celebrating

small victories, accomplishments, and sometimes the fact that we are not having to

accomplish something, which according to occupational therapist is a whole other level

of achievement for the parents. So often over-looked, but critical to everyone is the

ability to ‘not do something, be somewhere, or keep to a schedule’ is the true

accomplishment in this setting.

Generally the participants of the study accepted the challenges, educated

themselves, and sought out support for their children diagnosed with SPD and the

families. They did not complain, although there was a comment in regards to the fact that

there ‘simply was not time to complain.’ The participants were honest, and spoke with

their soul when conveying the struggles that exist with children diagnosed with SPD.

Each family was doing their best to provide needed tools for their diagnosed child, while

trying to balance the needs of their family unit. Their devotion to the family, their

children, and their demands is to be commended.

Finally, this study was a basic qualitative design. It was designed as an

exploratory study from an advocacy perspective. Due to the flexibility allotted with the

design, the participants (n=5) were able to provide a rich, detailed perspective of the

experiences of children diagnosed with sensory processing disorder and their families.

The study offered a copious vignette of daily lives, daily tasks, and the struggles and

expectations of the experiences of a sensory processing diagnosed child and their family.

Lastly, the parents that shared their experiences are providing other parents what they felt

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most important . . . that without support from the APA and academic settings, you are not

alone, and other support is available.

74

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Appendix A: Informed Consent

Informed Consent

Melissa Scotch

Dissertation

mscotch_psyc@hotmail.com

Project Description: Dissertation

CONSENT FORM

You are invited to take part in a research study regarding the experience of children with

sensory processing disorder. The researcher is inviting an occupational therapist and

parents/ caregivers of children with sensory processing disorder receiving services from

the same occupational therapist. This form is part of a process called “informed consent”

to allow you to understand this study before deciding whether to take part.

This study is being conducted by a researcher named Melissa Scotch, who is a doctoral

student at Walden University.

Background Information:

The purpose of this study is to provide further understanding in the area of sensory

processing disorder.

Procedures:

If you agree to be in this study, you will be asked to:

-ended questions regarding the experiences of children diagnosed

with sensory processing disorder.

ns will be answered from both an occupational therapist’s perspective

and from the parents of children diagnosed with sensory processing disorder.

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answer the open-ended questions whole-heartedly and truthfully.

followup for clarity will be executed.

Here are some sample questions:

1. Can you share your experiences as to how you feel the school districts are

accommodating children with SPD?

2. From your professional experience, what do you feel is the impact of children’s

social relationships and school performance that are diagnosed with SPD?

3. In your professional experience, what is the impact on families living with

children diagnosed with SPD?

4. Can you please describe two experiences that stand out more than any other

experiences with your child? Explain the experiences and what tools as a parent

you utilized to help you child.

5. Was your child ever diagnosed with a different diagnosis that eventually you found

was incorrect, prior to receiving a sensory processing disorder diagnosis?

6. Once receiving a diagnosis of sensory processing disorder, was it difficult to find/

receive services specific to this diagnosis.

Voluntary Nature of the Study:

This study is voluntary. Everyone will respect your decision of whether or not you

choose to be in the study. No one at Wayne Memorial Rehabilitation Services will treat

you differently if you decide not to be in the study. If you decide to join the study now,

you can still change your mind later. You may stop at any time.

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Risks and Benefits of Being in the Study:

Being in this type of study involves some risk of the minor discomforts that can be

encountered in daily life, such as stress or becoming upset. Being in this study would not

pose risk to your safety or wellbeing.

Benefits of the study will include but are not limited to highlighting the importance of

sensory processing disorder being recognized as a stand-alone diagnosis, bringing

awareness to those that work with these children in social settings, and to develop

understanding of the disorder on a much broader spectrum.

Payment:

There will be no payment or gifts provided in this study, however a follow-up thank you

via email communication will be sent to all participants.

Privacy:

Any information you provide will be kept confidential. The researcher will not use your

personal information for any purposes outside of this research project. Also, the

researcher will not include your name or anything else that could identify you in the

study reports. Data will be kept secure by providing anonymity to participants. In

addition, storage of all data will be placed on an external drive and will be password

protected. Any hard copies of material will be destroyed after scanning and moving to

the external drive. Data will be kept for a period of at least 5 years, as required by the

university.

Contacts and Questions:

You may ask any questions you have now. Or if you have questions later, you may

contact the researcher via phone at ***.916.0681 or by email at

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melissa.******@waldenu.edu. If you want to speak privately about your rights as a

participant, you can call Dr. Leilani Endicott. She is the Walden University representative

who can discuss this with you. Her phone number is ***-312-1210. Walden University’s

approval number for this study is #05-31-16-0172240 and it expires on May 30th, 2017.

Please print or save this consent form for your records.

Statement of Consent:

I have read the above information and I feel I understand the study well enough to make a

decision about my involvement. By signing below, I understand that I am agreeing to the

terms described above.

Only include the signature section below if using paper consent forms.

Printed Name of Participant ______________________________

Date of consent _______________________________

Participant’s Signature _______________________________

Researcher’s Signature _______________________________

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Appendix B: Demographic/ Parent Contact Information

Parent Contact Information

*This information is to be utilized if and only further contact, questions, or clarification is

needed on any questions pertaining the Parent/ Caregiver open-ended questions. Thank

you in advance for any and all time, helping us advance research and knowledge

regarding Sensory Processing Disorder.

Name___________________________________________________________________

Address_________________________________________________________________

Phone___________________________________________________________________

Email___________________________________________________________________

Child’s age and gender_____________________________________________________

*if you have any further questions or concerns, please feel free to contact me directly at

mscotch_****@hotmail.com

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Appendic C: Occupational Therapist Open-Ended Questions

7. How many years have you been working with children diagnosed with SPD?

8. Have you seen an increase in the number of children diagnosed with SPD?

9. Who diagnoses SPD?

10. What tools do you utilize to identify SPD?

11. What would be your estimation of children with co-morbid diagnoses with SPD

and what percentage of children have a stand-alone diagnosis of SPD?

12. What would be your estimation of children with co-morbid diagnosies with SPD?

13. SPD is an umbrella term for many groups and sub-groups of children with SPD,;

what do you see most often? What group or possible sub-group do you treat

most?

14. Can you identify what you feel are the most common red flags to help identify

SPD in: Infants? Preschoolers? Grade-schoolers? Adolescents and Adults?

15. Current research is showing 1 in 20 children struggle with sensory issues the\at

impact them daily with even some research showing higher statistics as much as 1

and 6 children struggling; do you agree? Will you elaborateregarding thoughts as

to current statistics?

16. What do the families of the children you work with state are the most difficult

daily challenges?

17. How does SPD impact of the families most?

18. Do you provide families with tools and resources to utilize at home? Which seem

to provide a positive impact (families prefer)?

19. How long do families of children with SPD usually seek treatment?

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20. Do you offer family therapy that includes family members directly in treatment

plan of children with SPD? Please explain.

21. What seems to be the biggest complaints for parents regarding their child’s school

system?

22. Can you share your experiences as to how you feel the school districts are

accommodating children with SPD?

23. From your professional experience, what do you feel is the impact of children’s

social relationships and school performance that are diagnosed with SPD?

24. In your professional experience, what is the impact on families living with

children diagnosed with SPD?

25. Can you please discuss your thoughts regarding SPD not being added to the

DSM-V? And do you feel this impacts needed services for children with SPD?

26. Please discuss, highlight, or provide any additional thoughts or data you feel

relevant or important to future study regarding SPD.

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Appendix D: Parental Open-Ended Questions

Diagnosis of children with SPD. Think about recent experiences with your child that

is diagnosed with sensory processing disorder, or perhaps some times that

have stood out in the past.

1. Can you please describe two experiences that stand out more than any other

experiences with your child? Explain the experiences and what tools as a parent

you utilized to help you child.

2. Was your child ever diagnosed with a different diagnosis that eventually you found

was incorrect, prior to receiving a sensory processing disorder diagnosis?

3. Once receiving a diagnosis of sensory processing disorder, was it difficult to find/

receive services specific to this diagnosis.

In looking back at your experiences with your child with sensory processing

disorder…

1. How often do you feel SPD issues interrupt your daily lives (daily, weekly,

monthly), and how many times within the choice you circled (i.e. if you circled

daily, you may say 4X)?

2. If your child has multiple diagnoses, how important do you feel that it is to deal

with the sensory issues/ struggles first?

3. What are some of your positive experiences your child has due to their SPD? Please

explain.

Children with SPD and Social Relationships

1. What do you feel is the biggest struggle for a child with SPD regarding social

relationships?

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2. If you could name the most effective tool to help a child with SPD in a social setting,

what would it be and why?

3. What is the negative impact on the child with SPD if they struggle with social

relationships?

Children with SPD and the Academic Experience

1. How has your overall experience within an academic setting been pertaining to

meeting the needs of your child with SPD?

2. Are behavioral struggles or learning a bigger concern in an academic setting?

3. Do you feel that administration, teachers, and staff have a true understanding of

sensory processing disorder in order to effectively aid children with SPD in an

academic setting? How does tis impact your child’s academic experience? Please

explain.

Children with SPD and their Families. Based on your experience of living with your

child with SPD:

1. What is the most difficult issue you face? Please describe in detail for full

understanding.

2. Is there another difficult issue you face as a family? Please explain in detail for full

understanding.

3. What are the most common interruptions in a typical day for you (and sibling if

applicable) regarding your child with SPD?

4. What is THE biggest challenge for you as a parent of a child with SPD?

5. What is the biggest challenge foe their siblings? (if applicable)

6. What is the role of occupational therapy regarding support for your child with SPD?

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7. What other interventions (therapy, training, programs) are helpful to you as parents

of a child with SPD?

8. Do you feel you have a true understanding of the diagnosis? And what could be

approached differently, or better to provide you with needed SPD educational

information?

Please take an additional space to express additional important direction or

information you would like to share regarding your child with SPD.